Tag Archive for: treatment diaries

Male Survivor Prostate/Bladder Cancer… A Diary Entry

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Today I am a male survivor of bladder and prostate cancer – annual Oncology visit…still here, still healthy, PSA still less than 1%. Possibility for bladder cancer’s return are extremely minimal. That’s now six years in remission. Now thinking about removing the alien (aka port). To those either starting to deal with this inconvenience or have dealt with it…STAY POSITIVE!

Where it began…. The port was installed yesterday. No big deal, only discomfort came from injection site for the IV (I have crappy veins) and learning how not to sleep on my right side…could be worst. Day 1 of chemo was this morning not bad. I have an incredible oncologist, he’s upfront, informative and has a sense of humor!! The entire Cancer center staff is incredible. With their support, my great friends and especially my wife, the road (although, interesting) will be made a lot easier. Day 2 (consisting of three significant meds) will be interesting.

Completed my first round of chemo yesterday, only two rounds (8 treatments) remain. What have I learned; trust your doctors, do your research to be as informed as possible, surround yourself with positivity, support your body’s recovery by; eating, staying hydrated, and stay positive.

Last week’s sessions marked the halfway point for me, as well as reminded me how tough back to back treatments can be. The good news, my oncologist feels chemo is working and that’s all I need to know. My Christmas present…no treatment this week, well deserved!!

Having a positive, ‘I will survive this’ approach is the only one to take if living is your objective. Due to the aggressiveness of my ureteral carcinoma, bladder removal is being proposed as the best (next step) option. It’s the consensus of four doctors. This includes my oncologist who is someone that consistently emphasized a focus on my life’s quality and quantity above all else. As a result, we continue to have very frank and realistic conversations. Essentially, I trust him. It will be a significant change, however a good friend endured a similar situation more than six years ago. Her insight benefited me greatly during chemo and I’m certain, will continue prior to and after surgery. Stay positive and continued success to you.

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites). The prior 12 months allowed me to experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks’ post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills. Not that I think about it…. I didn’t have a good time.

This week my last three-month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…. THANK YOU!!  I can only hope to do the same for others!

Male Bladder Cancer Survivor…A Diary Entry

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Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I was diagnosed with terminal systemic metastatic bladder cancer in 1991. I was given 3 to 9 months to live and sent home to get my “things” in order. The doctor recommended that I take a cruise! This was after bladder cancer was found in 1990, treated surgically twice, and I was told all was fine.

Fast forward to 2011.

I am working in Lebanon as a police trainer after serving 3 1/2 years training police in Iraq.

Since it has been a “few” years since my initial treatments, I have lost much of the details I once knew so very well. Since my cancer bout, I have lost my father and brother to cancer, among many friends and other family members. Only God knows who dies and who lives but I know what the doctors did to me that the others didn’t have the good fortune of having done to them and I credit that to my good health, cancer free status and living life large. It was excellent doctors, with excellent medications guided by Gods hand and the experimental High Dose chemotherapy that saved my life. It took me six months to fight the disease, but after that it was all downhill. I went back to work as a deputy sheriff and completed another 10 years for a 27-year retirement. I worked a couple little jobs before going to Iraq as an International Police Instructor and I have never slowed down.

I know that the decisions facing ever cancer warrior are daunting. I know that had I been given the option of removing my bladder, I don’t know what decision I would have made at the time. However, being fortunate enough to have hindsight, it would have been the best course of action for me. I wasn’t given that option and was told after having undergone surgery twice and a session of mild chemo each time, I was cancer free and sent on my way. We of course must believe our doctors and want to believe we are cancer free, but thinking back…. my bladder was completely full of cancer although “they said” it did not permeate the bladder wall. Obviously, it had or did, and circulated throughout my body. I had bladder cancer on my lung, behind my heart, inside my left femur as well as other places. In fact, that was how I learned that the cancer was systemic. When the cancer was flowing systemically, I felt no pain but when it permeated my femur and ate away about 4″ just above the knee, I had pain. I didn’t relate it to cancer in the beginning and my doctor fed me pain pills until I could no longer tolerate the pain. That’s when I learned that I was terminal and the rest is now history.

I hear lots of people saying to listen to their doctors, do what their doctors say, but I am the first to caution about putting too much faith in your doctors. Consider what they know, but it’s your life, not there’s and if it doesn’t make sense, then it’s your duty to research and engage in frank open and meaningful dialogue with your doctors. Life goes on and it is a minor inconvenience to give up your bladder compared to the alternative.

My prayers are with all of you fighting cancer. It is a nasty terrible disease but NEVER SURRENDER and hit it HARD. This is not a time to handle this disease delicately. I underwent three sessions of High Dose chemotherapy. It was difficult, and experimental, but it sure beats living for 3 to 9 months even if I had taken the cruise….and by the way…in early 2006 I took a 3-week cruise to Hawaii anyway!

It’s NOT Just Skin Cancer…

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Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I’m new to Treatment Diaries and since this is my diary, I want to share some thoughts that are now near and dear to my personal experience with this dreadful condition.  Let me start with what I’ve heard more times than I can count over the past decade and most often when sharing my Melanoma diagnosis with those who are uninformed.  It goes something like this – “What kind of cancer did you have?”  My response, “I was diagnosed with stage III Melanoma.”  The exchange – “Oh I think I’ve heard of that, it’s just skin cancer…right?”  In fact, I’ve had people tell me I was lucky to just have skin cancer.  Quite possibly the one thing you should consider never saying to someone with Melanoma.  Not only is it completely untrue it will do nothing to make the individual with the diagnosis feel any better about their situation.  The truth is, Melanoma is one of the deadliest forms of skin cancer.  It’s not just skin cancer.

So now that we are clear on it’s not just skin cancer, a few things I wish I would have known:

  • Research suggests that approximately 90% of melanoma cases can be linked to exposure to ultraviolet (UV) rays from natural or artificial sources, such as sunlight and indoor tanning beds.
  • However, since melanoma can occur in all melanocytes throughout the body, even those that are never exposed to the sun, UV light cannot be solely responsible for a diagnosis, especially mucosal and ocular melanoma cases.
  • Current research points to a combination of family history, genetics and environmental factors that are also to blame.
  • You can read this Melanoma Fact Sheet for more information!
  • Support for melanoma patients is incredibly important and connecting with those who relate brings much needed encouragement along with valuable insight.

Unlike other cancers, melanoma can often be seen on the skin, making it easier to detect in its early stages. Keeping track of the changes to your skin and seeing a dermatologist on an annual basis can be a lifesaving event. If left undetected, however, melanoma can spread to distant sites or distant organs. Once melanoma has spread to other parts of the body (known as stage IV), it is referred to as metastatic, and is very difficult to treat. In its later stages, melanoma most commonly spreads to the liver, lungs, bones and brain; at this point, the prognosis is very poor.  Again…it’s not just skin cancer.

Skin cancer comes in many forms and for numerous reasons.  Your job is to protect your skin.  Our skin is the biggest most vital organ we have to care for.  We can’t live without it nor can it be replaced.  It’s ours for as long as we live so we need to take the vitality of it seriously.  Stay out of the sun, look for changes and recurring issues to your skin even in areas that never see the sun, see a dermatologist on a regular basis and make sure to wear sunscreen all year around.  It’s not just skin cancer especially when it can kill you.  It’s a serious topic and I feel so very fortunate to be able to share my personal experience.  I hope to be a help to others newly diagnosed and an inspiration to those on the journey.  Let’s kick melanoma to the curb together…

A Compromised Immune System…Myeloma & Me

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My year is off to a rocky start – Myeloma is wreaking havoc on my body and doing a number on my ever-weakening immune system. New Year’s Eve I went to the emergency room…. they ran tests and sent me home.  A few weeks ago, I went to the ER again as I have been puking nonstop, unable to hold down anything even those that go straight into my intestines via my GI tube. I was so dizzy I couldn’t handle it anymore. I figured they would do the normal treat and release but they didn’t. I spent 48 hours in the ER till they found me a room, my primary care physician came in and said, “I’m getting you out of here cause it’s most likely just an ear infection.”  Well that two days ended up being seven days and many doctors were called in, including a few of my previous specialists. He then called my oncologist who said yes, we will resume care just get her here. I then was at that hospital another seven days. They changed my formula after withholding some of my meds that entire time. Two weeks without Lasix and they wondered why my potassium bottomed out. Nothing makes sense about the time there but with my new feeds I’m doing well on.

So, I’ve been home a week now. My labs they drew Monday were normal. Potassium was 2.7 at the hospital and are 8.2 now. I had restarted my Lasix on Saturday before the labs were drawn. Of course, now I’m dealing with severe swelling. When I was weighed at the hospital I dropped from 204 to 130! No one is happy about the weight loss and I’m questioning if I need the Lasix, is it causing me to swell? So, I have an emergency cardiology appointment this week. I will also see my oncologist this week.

I’m also wondering if I have a blood clot as when I was in the hospital I started having numbness from the ankles to my feeding tube area!  So much going on ….and yes, I’m scared. My grandfather died from a clot going into his lung unnoticed by hospital personnel back in the 80s, I’ve told my care team about this and about the numbness and no one is taking me seriously. They called the doctor on record who did nothing either. Now my father found out he has clot issues in his legs (not his dad who had that clot but my moms, my father had to have surgical intervention to ease his).

TD March 2017All of this on top of dealing with cancer – too much for one person to deal with.  But no matter how poorly I feel and how worried I am for the future, I am reminded to advocate for myself and then others if I’m able to. I sometimes have a hard time remembering that myself…It’s going to be a long week

Early Detection of Skin Cancer Matters…

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Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I am a 32 year old woman- oh wait- 33 now! 32 is when my life changed forever. I noticed a mole on my chest about 2 plus years ago (and keep this in mind- I consider myself a hypochondriac) and I did nothing…. It was flat…then it wasn’t and I did nothing. I would mess with it because it was odd to me and I thought it started bleeding because I messed with it and I did nothing until a few months later. I went to dermatologist and they excised it. On sept 11th 2012, I received a call from my dermatologist ( luckily I was already home and my boyfriend was about to leave for work) and he said something like ” I’m sorry to tell you but you have an aggressive form of skin cancer called malignant melanoma and you need to call Johns Hopkins immediately to schedule surgery”.

TD Feb 2I was in shock and in tears. The next month of my life was the worst I have ever had. Within two weeks I had all consultations, Pre- op requirements and surgery done and it was time to wait for results. For those of you not familiar with melanoma- they removed the area of mole at dermatology office but then you have to get a wide excision so cancer will not come back in the area and then a sentinel node biopsy which through tests determine where the cancer is most likely to spread if it has already spread to lymph nodes. I was considered stage 1b at this point and I guess if it spreads to lymph nodes then you jump to stage 3. Also, melanoma does not have great survival rates – apparently it does not have an effective treatment like other cancers do so what I thought was just ” skin cancer” can kill me and does kill young people quite often. Needless to say I was scared shitless- facing mortality before even getting married. In fact, I feel like I was just starting my life.

I started dating the love of my life only 2 1/2 years before and we were having the time of our lives. The universe was on my side…. But this changed
everything! The wait was the worst- please don’t spread….. And it didn’t! Now while everyone celebrates I’m cancer free- I know that the beast is a bastard and it can come back in lymph nodes and organs or on the skin again and the fight starts again. I’m waiting for the other shoe to drop and looking for resources and outlets all the time for my anxiety or peace of mind. I’m pissed people think it’s just skin cancer but why would they… I did. Educate! Awareness is where the cure for melanoma is right now. Especially in this jersey shore era

A few months later….

I hate you sun

So this is supposed to be a Pre- valentine romantic weekend in a lovely mountain town cabin we frequent…. So why am I crying while the boyfriend is showering?? Because these melanoma stories are heartbreaking. Young men and women dying while their parents and husbands/ wives are caregivers until the last moment. It’s terrifying that I will never know if all of it is gone- until it comes back. While we celebrate our love this weekend it’s terrifying that we may never be able to have a baby (I’ve been reading a lot about how pregnancy hormones can accelerate any cancer- thanks jackass cancer!). My liver results came back as fatty liver so my diet needs to resume: / but yay! No random melanoma in liver! Now I wait for results from cervical biopsy which I get on Wednesday and if all is well than I can breathe again for 2-3 weeks before foot doctor and dermatology appointments.

Back to the reason I am posting…. Since I was diagnosed in September 2012- I have spent 2 days outside- only 2 in over 4 months- because I HATE the sun! So now we are in a lovely town with woods and walking to be done… And I didn’t even bring sunscreen! Ummmm….. Did I forget the sun and melanoma are evil? Did I think my SPF moisturizer would cover my whole body for a day outside? I hate that melanoma has ruined my typical behavior. Now we have to hunt down a hat and sunscreen because the sun is a beotch to my skin and I always knew that but a little pink never bothered me before… Any who….Now I’m going to read my boyfriend the melanoma blog that had me in tears so he is reminded like I am daily of this cancer crap. Ps I will have a lovely weekend but needed to yell at the sun a little

Finding Meaning After the Caring Is Over.…

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Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

It’s almost six months since mom died. I still am in a vulnerable place. Still trying to work, but not seeking it aggressively. Still trying to find my path forward. I had a bad fall about a month ago, and I’m still recovering. My knees, legs and feet are not right. Through no fault of my own, I lost my health insurance. As of today, I get to choose my plan on the exchange, and hope to get back what I lost, keep my doctor, and get back on track.
treatmentdiaries-dec
In this weird time, I have learned something about myself. Through caregiving, I learned to be still. During the worst times before mom came to live
with us, I had to literally sit still in her apartment, and just be there when she was full of fear, hallucinating, paranoid. During the worst times of her dementia, when I was searching for information, help, connection, I found power in stillness. Overpowering my own fear. Being strong for her. It took years, moving her here with my husband and myself, fighting for everything she needed. She gained so much here. The return of her sweetness and fine sense of humor, the conquering of her fears, the benefit of community.

Fast forward to the last days of caregiving. More than six years later, mom had become so frail. At the end we brought in a hospital bed, supposedly to keep her safely in bed. What the universe didn’t know was that this tiny woman had the power to launch herself over the bars, or through the openings between the rail and the foot of the bed, and end up in her old bed, sitting in her wheelchair, or even curled up on the floor. I never had sleep. I never knew what or where she’d be when I went into her room. I needed to be on guard to hear her soft raspy voice call me at any moment.

But the thing that frightened me most and what I HAD to face and get over, was the fear of infantizing my mom, by changing her depends in the hospital bed. This fear was causing us to get up at any hour, and take her into the bathroom, where I had to hold her up with one arm and tend to her with the other. It was hard on her, she was too weak to support herself. It was hard on me, my shoulder was already compromised from the years of supporting her or steering her walker, among so many other things.

This fear grew out of caring for my dad years before, who had Parkinson’s, and was so angry at his loss of dignity. My brother and I have terrible memories of tending to him, and falling over with laughter when things went wrong. My dad was so angry. I loved my dad more than anything, and incurring his anger left me scarred.

So when faced with having to change my mom in her hospital bed, I avoided it as long as I possibly could. But finally, I asked the visiting hospice nurse (more about this later) to show me how. I learned a few tricks from her. But I still had to get over my fear of insulting her dignity. Mom was not like this. She didn’t seem to be angry that her daughter was changing her, holding her up. She was fighting her own weakness. She might not have known who I was at these moments. And mom had her sense of humor intact. Till the very end. This was her gift.

The night I finally changed her in the bed, I decided to reward us both at every turn with cheering! Praising her to the skies when she could turn over on her side, praising myself with my ability to do every task! Praising us both with loud cheering! Good for you! Good for me! Hooray for us! Hooray!

Now you may think this is a little nuts. And maybe it is. But by gaining courage through humor, I think I have found meaning and conquered my greatest enduring fear.

The Effects of Chemo and Ovarian Cancer

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Real ovarian cancer patient experiences shared privately at Treatment Diaries. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Had my first chemo January 20th. LOVE the pre-chemo “cocktail” they give. Relaxed me so much I slept through most of it. First four days after were fine. Next four, lots of nausea and threw up a few times. Doctor added two more anti-nausea meds and finally got it under control.

Using two chemo drugs; Carboplatin and Taxotere.

Two weeks after the first chemo my hair started falling out. Nausea and vomiting I can handle. Being tired a lot I can handle. Fingertips tingling I can handle. Hair falling out by the handful……..that was just demoralizing!

I put up with it for two days. Then, we shaved my head. I do mean WE. Went into work and sold raffle tickets. Winning ticket pulled got to shave my head! It was hilarious! Got pictures and lots of video. Plus, raised $322 to help with expenses, which I really needed.

My “work son”, Andrew, was the winner. Worked out good that way, I think. His mother is going through chemo for breast cancer, started losing her hair and shaved her head. He was having a hard time dealing with that. Shaving my head seemed to give him a new perspective.June TD quote

I freely admit, if I’d shaved my head at home by myself, I’d have bawled my eyes out the whole time. But, doing it at work made it easier. Everyone was cracking jokes and laughing….it was more like celebrating a milestone than doing something that was a reminder of something bad.

One thing I’ve noticed is that the “stubbies” don’t fall out as easy once they die as full strands do. Then, when I put on a scarf or hat, they get shoved down in the hair follicle and it’s uncomfortable. BUT, I found a great fix for it: LINT ROLLER! Yes, after my shower, I stand in front of the mirror and take a lint roller to my head. And laugh myself silly the whole time!

Turns out, I don’t look bad bald. So, I’ve opted not to bother with a wig. I use a scarf or hat outside, but go au natural indoors. And, I have to admit, I love how much time I’m saving in the shower! Especially on the days when I have no energy!

Second chemo was February 10th. Used my chemo port for the first time as well as an IV. That was interesting. And they gave me some kind of IV anti-nausea meds since the first dose hit me pretty hard. Worst side effect this time was that it messed with my taste buds. For about 10 days, all I could taste was sweet stuff. Couldn’t taste meat or spicy anything. Talk about frustrating! Grrrrrrrr!!!!!!!

Took the long way home afterward. Was stopped right next to a police officer at one light. He had about as much hair as I do right now. So, he’s looking over at me, I’m looking over at him…..we both were grinning at each other. Very cute moment.

Living with Breast Cancer – A Patient’s Treatment Diary

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Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Today I turn 42….not up for celebrating at all…but grateful for the loving and warm messages from friends and loved ones around the world and from home. Grateful hubby and my mom are here with me.

Had a bout of feeling sick this morning and had to cancel my appointments. Feeling better now…hope it was just nerves and nothing else…as need to be STRONG and ready for Round 2 chemo this Saturday.
I think it should be better this time as I know what to expect in some of the side effects from Round 1 and feeling physically stronger and wounds are healing better.

I’m newly married – 1+ years. Diagnosed with breast cancer end of May and underwent a right mastectomy multifocal tumor, with removal of 21 lymph nodes. I had an immediate reconstruction with TRAM flap procedure on June 13 and started AC chemo July 26. 12 weeks – every 3 weeks cycle. 6 months of chemo in total: AC and Taxol + Herceptin (weekly for 12 weeks after AC). Then Radiation daily for 5 weeks + 5 years of Hormone Therapy. My sister found this site for me as she realized that I have had limited contact with support groups here in Hong Kong due to limited English speaking groups. I am from Canada, lived in Dubai the last 5 years where I had met my hubby and we moved to Hong Kong a year ago.

I have been thriving on the words of those who can relate to my experience, well wishes and positive outlook! I just had a Reiki, Osteopath session and physiotherapy today. Needed it! Think my nerves are a bit shot….thinking I wasn’t nervous but likely am in anticipation of my next doctor’s appointment and review of how I am doing. I’ve found meditating helps a great deal and my Reiki master suggested I meditate for a few minutes every day for 21 days….This continues to be a journey for myself and self-healing.

Fast forward a few months….

I have finally finished CHEMO!! YAY! And have now started Herceptin every 3 weeks for 8 more months and Tamoxifen for 5 years. Radiotherapy started today and it will be daily for 5 weeks. Was quite stressful…and arms got numb and sore.

Life is closer to normal that it has been for quite some time and I’m able to travel and enjoy a few pleasures. My visit to Phuket was good and much needed quality time with hubby. Last week I was at the Farm – San Benito in the Philippines for a wellness program. So good for my body and healing.  I’m officially a survivor and I hope to share with you, learn about your experiences, your advices, tips and laughter! Love and light

Real Stories of Lung Cancer

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Caregiver 1: Female caring for Male with NSC Lung Cancer

My husband’s last scan was terrible. Everything that had once been invisible on previous scans had grown dramatically, and there are new nodes and tumors. He will get a port for Christmas, and start 2 new types of chemo by Jan. 1.

This is difficult to deal with for everyone. It was like we were able to live in a form of denial for quite some time. Not anymore….

He was diagnosed with stage IV non-small cell lung cancer a little over 2 years ago. He will start on a Carboplatin/Taxol combination. He will have a port installed just after Christmas, and begin the New Year with his 1st round of 6 cycles. So far, he hasn’t had radiation because it everywhere, so they have been trying to get it under control systemically.

I am so blessed to have a husband who, despite all he is going through, still tries to make life as easy for me as possible. I am so thankful for a wonderful family.

Patient 1: Female (USA) Lung Cancer

I have been thinking of making a journal about my health issues and here it is. This is great. I had cancer surgery almost 15 years ago and I have been cancer free and relatively healthy ever since. This last Oct. my illusion came to an abrupt halt. My lung specialist said I had a mass in my left lung and it needed to come out. Ah you said what??? He sent me to a Thoracic Surgeon and he was ready to sign me up for the next opening. I felt my stomach turn and I said I needed to see my Primary Care physician. I saw her a week later and told her I wanted to wait and see. She agreed and told me about a blood test that would screen for cancer. I had the test and it says I don’t have any Cancer in my system. I decided to get another opinion this time at UCSF. This is where I had my Lung Cancer surgery done in 1996. I am waiting for my appointment. It is in the middle of Jan. I don’t understand how well respected and learned doctors can do this. I have had two Dr. and a blood screening say they were wrong (and I’ll eat my hat if they’re right) but they insist the mass is cancer. I hope everyone gets second and third and fourth opinions. Well we shall wait and see. Thanks for the opportunity to say my peace.

My Cancer fears were gone once I had my surgery in 1996. I really never gave it another though. I did have yearly CT scans and they were consistently the same. I was well aware of the scar tissue present but I was a smoker. I was a hairdresser, used a lot of chemicals that are labeled dangerous. And I was a sun goddess and a swimmer and lifeguard. Again not very good conditions if you want to be cancer free. For any cancer!

I returned home from UCSF with the same old story. Let’s watch and wait. I will get another CT scan in 6 months and just go from there. Other than that I sure enjoyed being in San Francisco. I really love that town. I am feeling good and I will be doing life as usual for now. I started doing square dancing once a week and I will rejoin the gym. I hope everybody is feeling well and continues to have happy thoughts for their new year. 🙂

Well, I have missed the last two weeks of SD. I keep running a fever and feeling sort of sickish. I don’t want to be a rabbit out of the cage and push myself. I’m not in a race. I will rejoin the gym ASAP. I still haven’t heard from my doctor as to what she thinks is the next plan. I’m not too sure I will keep her as my primary Dr. She is way to controlling and this freaks me out. She works for me. I think more doctors need to remember they are working for their patients and any decisions need to be mutually agreed upon and that they are not the ultimate authority. I feel like she wants me to do everything her way and that I’m not her… Oh well, I did my will today and that went well.

Patient 2: Male (Malaysia)

Diagnosed with Stage 4 Non-Small Cell Lung Cancer, hv chemo treatment with Carboplatin + Taxol (6 cycles)2008 ; Tarceva (21/2 months)2008/2009 ; Cisplatin + Alimta (3 cycles) 2009; Alimta only (3 cycles) 2009 ; Alimta only (2 cycles) 2010.
Have experience Lung collapse and drain out fluid from lung in 2010.
Treatment not manage to reduce the quantity and size of tumor, but, manage to have it under control with no major changes for the total quantity and size since diagnose until now.

I proceed with chemo and this round I decide to use back the same drug that I use last year, Gemzar and Navelbine.

All went well after chemo I feel good and suddenly, situation changed and I started vomiting for 3 days, thereafter I felt very tired and I started to loss balance while walking. So, decided to proceed to hospital on. With blood test report, doctor ask me to admit hospital, as my Sodium is very low, it’s the cause of tired and dizzy, then my hemoglobin is low too, so, cannot proceed for chemo.

After all the paper work, I admitted and taking two bags of blood transfusion, then, follow by dripping of sodium water. On second and third day, they took my blood again, too bad, both show that no improvement on my sodium level, but, lucky that hemoglobin n RBW is getting so much better.

After 4 nights in hospital, I requested doctor to allow me discharge, no doubts I am not recover from short of sodium, but, I feel so much better. Finally doctor agreed and discharge me with sodium tablet.

Since back home, I feel good and I have regain my appetite, I really eat and enjoy.

Life goes on – I don’t think of I will ever rest from Chemo treatment for 5 1/2 months. Beside of the back pain disturb me, some breathless at times, basically, I have no complaints.

lung cancer ribbonI have delay my CT scan since April this year and finally got it done two days ago, and yesterday meet up with doctor to discuss about the result of scan. Overall, not much changes to my brain and bone, consider stable. But, compare with previous scan, tumor in lung show some 30% progression. Doctor advise me to proceed for Chemo by next week to get situation under control. Tentatively scheduled for early next week. Anyway, there are things for me to consider and I pray to Lord to guide me and show me the way for the treatment. My main concern is back pain that disturb me almost every night with the pain moving from one to another place at my back. Life now is with daily pain killer and because of the continue taking pain killer, I often feel tired / weak.

Spoke to doctor about getting opinion from Orthopedics to have some idea is the pain due to my spine, but, doctor told me that it is not necessary.

Well, I will arrange appointment with doctor in another hospital and have fix it on coming Monday, hopefully can have some solution. Life goes on, but, no more normal for the last couple of weeks and I hope that Lord will take away all the pain and restore my body with strength and energy.

No worry be Happy. Believe and have Faith.

 

 

Real Stories of Pancreatic Cancer

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Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Patient 1: Female (Canada)

This is my first entry. A friend directed me to a related site today, and somehow I ended up here. I was given the pancreatic cancer verdict the end of last year – after months of testing and being told ‘whatever it is, it isn’t cancer’. Ha! So much for the – it isn’t cancer theory. I was referred to a world class surgeon in Toronto early this year who was able to do a Whipple procedure, removing about a third of my pancreas.

Initially he thought he got it all. However subsequent scans revealed the original cancer had metastasized into the liver. So then it was off for chemo. What a nightmare. Again, an excellent oncologist at an excellent facility. I was put on the 5-FU regime (how appropriate is that name!) from May-Nov. Twelve treatments in total. Nearly killed me. I don’t think I have ever felt as ill as I did during the 2 weeks between treatments. Just began to feel normal when it was time to begin all over again. But, by the end of the year my tumors had reduced considerably, and my oncologist considered me his poster girl. We all knew the reality of pancreatic cancer.

However, by the end of February the party was over. The tumors were back. So another hit of 5-FU. This time the drug concoction plus the accompanying steroids, triggered bleeding abdominal ulcers. It was decided to discontinue 5-FU. I am now receiving Gemcitabine, a less aggressive treatment. I feel I’ve been given a reprieve chemo-wise, but only time will tell if this will work for me or not.

I would be very interested to hear from anyone with pancreatic cancer. I am blessed with a wonderfully supportive husband, family and friends. Life is good. But I hate this disease with a passion. Acceptance of it is not in my vocabulary.

 

Patient 2: Female (USA)

Just found this site and today is my first entry. I was diagnosed the end of June with inoperable pan can. I went through an experimental drug trial for Tnferade in the fall. It was absolutely brutal….and did nothing as far as we know. My tumor has remained basically “stable” since my diagnosis, with my current treatment of gemzar every other week. The gemzar really knocks me down for a few days, but being as I’m still “stable”, I guess it’s worth it. Early September of this year I spent two weeks in ICU, as all of my treatments/drugs created a 5cm duodenal ulcer……Had no idea I had it until it began to bleed profusely…..10 pints of blood later, I’m still here. Back to work now, but only three days a week. Absolutely dreading the winter, having lost 50lbs since this started I don’t have an ounce of fat for insulation!

Feeling so much better since the ulcer was taken care of! I believe it has been a undetected problem for quite some time, but how would you know….I mean was I having a lot of abdominal pain…yes….but I have pan can so how do you differentiate? Best of all I am sleeping better. Prior to the episode, I was usually only able to sleep two hours or so at time! Now my sleep is nearly “normal. I had plans to go to Vegas with my family in October for a family wedding….but of course was side lined by the hospitalization. Was able to rebook my husband’s ticket and mine for the first week of December and am excited at feeling well enough to have a good time…..and have some nice weather, if only for a weekend!!! Of all the compromises this illness has forced upon me, not being able to tolerate traveling much has really been one of the worst things since I got sick. Prior to getting sick I travelled the world extensively. I have plans to celebrate my 50th birthday this March in London…and soooooo hope I will still be well enough to do it!

Hello friends! Still here!!! Have gained back 25-30 lbs. and doing much better! Been off chemo for eight weeks now. The last round has damaged my nerves in my hands and feet. The doctors say they have exhausted all established tx options for me. This is not necessarily bad news, as the reason is more people in my shoes…don’t get this far. My last scan showed my liver mets are nearly imperceptible and the once very large head tumor itself shows a “residual”! They don’t have any idea what this means in the long run, and consider me a “lucky” anomaly. I am far from the person I was physically, before this started…but certainly grateful to still be here. I hope someone reads this post who has been recently diagnosed with inoperable pan can……I know that the odds are so very poor for most of us….but PLEASE believe there are cases like mine out there…..It isn’t always a 3-6 window. When I was diagnosed, I never expected to be here this long…26 months and counting. Not that I was being a defeatist or negative…..It’s just as a healthcare professional myself, I understood the grave reality of my situation. That said….we all MUST remember….ever case IS different and the best advice I can give is to always stay positive!!! Since I the first of the year I have begun to try to resume my life’s passion….regular travels. I have been to London twice, one in March to celebrate my 50th with friends from around the globe, and last month for a music symposium my husband was invited to attend. I plan on getting back to London in a month or two, and to Vegas in September!!! Anyways…thanks for reading…and stay positive!!! XOX

Patient 2: Female Caregiver of Male patient (USA)

Just little background… My husband, 54, was diagnosed with Stage IV Pancreatic Cancer last Sept. We went to have the Whipple procedure and found the cancer had spread to his abdominal cavity. He just completed his 10th round of Folfirinox. The treatment side effects have been continuing to get worse…. he sleeps most of the day and when he is awake he is in pain. His weight has gone from 220 to 150 in the last year and with his appetite gone it continues to go down. We have been holding on to the hope that once he completed 12 rounds of Folfirinox they would do another CT Scan and God willing the spots on his abdominal wall would be gone.

We thought he would then be a candidate for the Whipple. He has a tumor in the head and tail of his pancreas. Today we were told that wouldn’t be happening…. while I understand the reasoning (the lengthy recuperation period, the added weight loss and the overwhelming odds that the cancer would come back anyway) I am heartbroken. I had convinced myself that we were going to beat this. I never let myself think we couldn’t. I’m supposed to grow old with this man, our “golden” years…. we raised three beautiful children together, watched the oldest get married, watched them graduate and go their own ways…. it was supposed to be “our” turn. Our kids are 25, 26 & 30.

Today we had to tell them that time is limited. All I can hope for realistically is another wonderful five years… I really hope I get another 5 years.

What It Feels Like to Have Breast Cancer: Diary Entry

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Diagnosed With Breast Cancer May 14th, 2015

Caught incredibly early, I am very lucky! I had a lumpectomy on May 22nd. It did not spread to my lymph nodes. I start chemotherapy on July 17th. It will only be 4 treatments 3 weeks a part. Then radiation followed by hormone therapy. The worst part of all of this so far is watching my loved ones reactions to what’s going on with me. I’m hoping this forum is a place where I can vent my frustrations and not see how it effects the people that care for me. Sometimes I just need someone to listen and not say or do anything. I’m hoping I have found the place I can do that!

One Month LaterBreast_Cancer_Entry2

Augh!! – That’s all I can say right now. That’s not true it’s just how I feel. I shaved my head last Friday before work because I couldn’t stand the hair coming out in chunks. GROSS!! It was so GROSS! And then I felt FREE totally free from that anxiety. Relieved and Happy. I almost love my bald head. Almost!! But that didn’t last long. Now I hate it that everyone knows. I no longer have control of who I tell, if I want to tell. Cancer again has taken something away from me and I HATE IT!!!! I HATE IT!!!!! And don’t get me started on the pity looks. Please stop looking at me with pity. My life is great. I am loved more than I deserve. My support group is unbelievable. Everyone should have the good that I have in their life. Why isn’t it enough? Why do the pity looks upset me so? I wish I could get a temporary tattoo on my head so people would think I’m a bad ass instead of a sick person. Is it wrong to feel this way? Then the guilt sets in. I feel guilty because this is only an inconvenience. I will recover and be able to do the things I love. It’s just a sucky roller coaster ride that I am not enjoying….. Did I mention I love roller coaster rides? Trying like hell to make the best of things and feeling like I’m failing miserably……..

Three months after diagnosis…

I have made it! 10 days after my last chemo treatment, 30 lbs. heavier, with neuropathy in my hands and feet I was up on one ski. No one was going to judge me. I had done it!!! So as I let go of the handle and slowly sank into the brisk fall water I let go! I let the sobs come and released all that cancer and its treatment held over me. It was one of the most monumental moments of my life. At that moment I knew I was not only a fighter, but a survivor as well.

 

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Breast Cancer Survivor – Exploring alternative treatments and clinical trials

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Diary Entry

To all my breast cancer sisters….as I found out when diagnosed with breast cancer in January 2012, we’re all part of a big sorority. My cancer was found from my yearly mammogram. I couldn’t feel any lump and neither could my doctor. Before making this too long let me just state the steps of my journey: my prayers became very specific to this news; I went back for an ultrasound – definitely found something suspicious; next met with surgeon, she ordered an MRI & amp, biopsy; result was a stage 1, invasive ductal carcinoma (scary sounding); surgery was recommended, also was told I now had a team of doctors I would be seeing (radiologist, medical oncologist and nurse navigator).

That’s the short story if you want to stop now that’s OK. However, I do want to mention the two newer medical treatments I was able to utilize after surgery – Savi catheter implant for radiation (1 week of treatments vs the normal 5-6 weeks of radiation) and Oncotype.DX test to determine if I would really benefit from chemotherapy. There’s lots of information available on both of these treatments, and of course discuss them with your doctor. From my experience I would recommend both of them if the pathology results are such that you meet the requirements for these treatments.

So the process began, I had at least a 1″ stack of papers to read on breast cancer treatments, types of surgeries, chemo, radiation, etc. At first I didn’t want to read any of it but after a few days I started digging in since I would have to make decisions particularly regarding what type of surgery – lumpectomy or mastectomy, pros & cons on both. I had about two weeks to make up my mind – I read, read, read & prayed, prayed, prayed (my husband was my partner in all my decisions as well). My choice was for a lumpectomy (called breast conserving surgery)based on the small size of my cancer & the location, and the fact that if after surgery the results showed it was in the lymph nodes I could have a mastectomy.

There’s no doubt that all of a sudden our life was focused on the doctor’s visits, education, patience and keeping down the anxiety while waiting for the day of surgery. The day of surgery finally came, prior to the actual surgery I had to have two procedures done; two wires implanted (with ultrasound guidance to help pinpoint the cancerous area for the surgeon, and a shot of dye injected in the breast which allows for the surgeon to pinpoint the sentinel lymph nodes (the first ones that would show if the cancer was on the move). The surgery went well and I went home that same evening to wait for the pathology reports which took two days. I was very anxious, of course, for that next appointment wondering what the report would show and knowing my next steps in treatment would be determined by those results. I was Blessed! I had no cancer cells in the lymph nodes and the margins around the cancer were clear. The surgeon had put in a temporary spacer during surgery hoping that I would be a candidate for the Savi catheter. My results did meet the requirements, so during this appointment she took out the spacer and inserted the Savi catheter. This meant then that I would see the Radiologist the next day and the radiation treatments would take place the following week – Monday thru Friday, twice a day, and that would be all the radiation treatments I would have.

It was almost two weeks after finishing radiation that we met with the Medical Oncologist and again, I was BLESSED, the test (Oncotype.DX) showed that I would not benefit from traditional chemotherapy. The doctor did want me to take a 1mg pill daily (his recommendation for me was Arimidex – one of several chemo drugs available) for 5 years. There are possible side effects with all drugs and you can switch to one of the other drugs if needed – everybody is different and you have to work with your doctor to determine what is best for YOU!

I have made this a very long entry, but I wanted to put this down for my own record of this cancer journey, and if the information is helpful to anyone else I would be very happy. I would welcome any questions regarding any part of this journey – diagnosis, treatment, surgery, post-surgery decisions, etc.

My final thoughts would have to be that the most important part of this journey was the deep gratitude I have for my husband (a great caregiver and partner throughout this entire 3 month trial), my children, son & daughter in-law, my grandchildren and all the prayer partners whose prayer support was so strongly felt and deeply appreciated. I was never alone, the Lord was always with me!

I would love to offer my support to any one facing or already on their breast cancer journey!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a cancer diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

 

Metastatic Melanoma Patient Diary Entry

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Diary Entry – Patient With Male Breast Cancer and Melanoma

I’m 72 and have lived most of my life in the Midwest, particularly Michigan, with forays to East Coast and West (New York, California) and two years in Sao Paulo, Brazil with lots of visits afterwards. Profession has been education on middle, high school and college levels as teacher and administrator. I decided when informed of my most recent illness to finally retire from university teaching in a grad teacher education program.

My first cancer was male breast. One of about 1400 a year in the U.S. Stage 2, no recurrence since diagnosis in 2003. Never worried about it returning. Second was metastatic melanoma, Stage IV, this year. Total surprise. I skipped Stages I-III with an unknown primary. Landed in my lung. All removed with a lobectomy (rhymes with my previous lumpectomy). I am now NED to hear this week after PET scan and brain MRI whether that continues to be true. I’m in the watch and wait category for further treatment–probably surgery first, then ipi*.

I don’t know how I am going to do with the program of 3 month scans. I do know I will have to live my life in 3 month chunks, but, of course, do not know how that will work psychologically. I have a very supportive wife, but she worries, too, of course.

April 2013

Had my surgery last Tuesday, back home late Thursday. Watching a good deal of snow out the window. I don’t mind at all not being out driving in it. It’s nice to be snug. We’re a snow belt city, one of the top fifteen or so in the country for total snow fall. I’ll have to look that up. Average winter just about 70 inches. I got into snowshoeing a couple of years ago at a buddy’s place in Sun Valley. Can’t make the reunion of the crowd this year.

Recovery is coming along. No exercise for another week. Then back in the pool, I hope. Can’t even walk around the block (not today, of course). Tomorrow I can drive. MelanomaDiary

“I’m feeling more and more optimistic about the melanoma. I think that’s better than looking around the corner. I have a lot going for me right now, and I’m convinced the ipi is working. Just not sure how well. I heard a doctor on a webinar yesterday say that those for whom ipi really works are like people who win the lottery. Why me? But it is you, and you’re done with melanoma for life. I’d like to be one of those 15%. I’d rather be that person than win the real lottery, no matter how big the payoff.”

As of August 2015 – Still thriving!

 

*”Ipi” refers to ipilimumab, a new monoclonal antibody drug that is being used currently in numerous melanoma clinical trials. Ask your medical team about these trials, or you can browse trials by using various trial finders such as the ones on cancer.gov or Melanoma Research Foundation.

Read more about patients and their experiences with clinical trials at www.TreatmentDiaries.com.  Real people, actual stories, shared in private so you can be more social about your health.

Melanoma Patient in a Clinical Trial

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From our partner, Treatment Diaries, this is a diary entry of a melanoma patient who participated in a clinical trial.

Diagnosis: Metastatic Melanoma in 32 year old female.

October 2013

I had a mole removed on my back, turned out to be melanoma stage III. Since that mole I’ve had 5 more removed all positive. I’ve had surgery on the first one and then lymph nodes taken out because they found microscopic cells. September 2014 is when they diagnosed it as metastatic and inoperable.

So a clinical trial is a chance for me to make a difference and potentially beat the beast. I have had two
immunotherapy drugs Interferon and now currently on Yervoy. PET scan and MRI are clean for now. I have a lot of side effects from the Yervoy which I’m on right now. Dr put me on steroids to reverse those side effects. I get rashes, colitis, headaches, fatigue, and heartburn from yervoy and muscle weakness; retain water, mood swings, anxiety, emotional from steroids.

I have a four month old baby and recently got married and moved states. A lot of changes in my life the last year and coping the best I can. I have serious moments of a break down but try to hold it together for the sake of my precious baby. Currently I am trying to take lower dosages of my steroids so I can go in for more scans. Dr says we are done with Yervoy because of side effects. But there are other treatments we can look into. That’s my story and please feel free to contact me anytime! I feel the more support I have the better my days turn out! I’m here if you want to talk I’ll listen. Sometimes that’s all I need is to have a shoulder!

January 2015

I go in on Thursday for a treatment called Infliximab.. It’s supposed to stop these side effects from the Yervoy, such as muscle aches and colitis. I’m really nervous because the shot itself has a lot of side effects from what I’ve read. Dr says I’ll only need one shot and it should help me get off the steroids which are a must! I’ve been on steroids since end of August… Right now I’m on 25 mg a day but my highest has been 100 mg. I don’t want to do the shot but I’m at a point it might be my only option. I want to feel normal again with no pills. Will that day ever come, who knows? I pop pain pills like candy and steroids like a race horse.

Starting to think I need a therapist to talk to because mentally I’m not handling things well. My husband says he believes everything will work out, but he’s not giving me the emotional support I need. I don’t think he understands… Takes care of the medical bills but as far as emotional support I’m not sure he can be there for me because he doesn’t understand my fear. Fear of limited days and wanting to enjoy life more. I feel I do the same thing over and over every day… I have a 5 month old so we are stuck in the house a lot and hubby just goes to work and comes home… Same routine everyday… I want to feel alive and excited! I want a date night or to feel sexy and I need affection, ok I’m done rambling I’ll keep an update on how the shot treats me. As far as Yervoy I’m done with it the doctor won’t let me do anymore. Too many side effects! After I get off the roids I’ll have another pet scan. More later…

 

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

From the Diary of a Bladder and Prostate Cancer Patient

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This diary entry from our partner, Treatment Diaries, is from a man diagnosed with bladder and prostate cancer in 2000.

Diary Entry:

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites).   The prior 12 months allowed me to  experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills.   Now that I think about it….I didn’t have a good time.

This week my last three month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…..THANK YOU!!  I can only hope to do the same for others!