Tag Archive for: diary entry

Real Stories of Lung 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.

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.

Pancreatic 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.

Pancreatic 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

Pancreatic Patient 3: 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.

When a Melanoma Diagnosis Brings Clinical Trial Options

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36 year old Female diagnosed with Stage III Melanoma on May 19, 2014

Diary Entry

I’m fairly new to this fight and not exactly sure what to even expect. Since my diagnosis, I had one surgery to cut off the melanoma (it was on my toe) along with a 3 week recovery while unable to work. It took three weeks for the biopsy to come back. I guess hearing the doctor say that the pathologist said that they had never seen anything like it, isn’t a good thing. Next, was an amputation of that toe, along with Lymph Nodes from my groin area. Those results did not bode well either. Out of the 3 that he removed had a tumor in it. So, my journey next took me to Baltimore, Maryland where I met with an oncologist surgeon. I had a complete dissection on my left groin area. During my follow up visit I found out that the doctor removed 11 lymph nodes and two more came back with cancer cells. I was readmitted to the hospital thinking that my incision was infected. It wasn’t, but the drains weren’t working all that well either. The doctor opened my incision and my wonderful husband has become my nurse and packs the incision twice daily. I couldn’t be luckier than having such a wonderful husband. During all this, I learned that I am extremely claustrophobic. That puts a slight crinkle in trying to have all these tests that I need to have. I try to stay optimistic and keep my sense of humor.

Clinical Trial Options

So now I am exploring clinical trial options.  I have asked for more information on Yervoy, with everyone’s advice. In my area, to receive Yervoy for stage 3 melanoma, you have to be part of a clinical study or whatever. My doctor promised I wouldn’t be given a placebo. But, I would have to travel quite a distance. I know that there are quite a few of you on here that have traveled for treatment. But, for me, right now, it’s just not an option. I have teenage children that need me to be home. I could never do this alone. My husband would be with me, which would leave no one at home…. I am starting on Paxil this week and should (depending on my insurance) start treatment next week. I have had two people on Treatment Diaries tell me about Yervoy and I don’t want you to think that I am not listening to your advice. But I have had 5 doctors tell me that interferon is probably in my best interest. I don’t know how this is going to go. I’m hopeful, and again, I won’t be alone. My husband has and will be with me for the duration of all of this.  I am hopeful!

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.

Diary Entry – Malignant Melanoma 3B

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From our partner, Treatment Diaries, this is a diary entry of a melanoma patient first diagnosed in 2012.

Diagnosis – Malignant Melanoma 3B
Male – 57 years old
First diagnosed Feb 2012
5 operations in a 1.5 year period upgraded to stage 4 Metastatic Melanoma
BRAF POS, as of Aug 5,2013.
Fully Disabled since Oct 30, 2013
Currently on Zelboraf Clinical Trial
Been NED since December 31, 2013

My recent MRI followed by a pet scan were both clear once again! I am still on Zelboraf at 1 pill a day. I have begun using CBD oil twice daily along with all the other things I do this to help me stay healthier and to keep the beast at bay. Come the end of October, I will have been off work for 1 year, on disability/ssi for income.  I still make it to the gym 1-3 times a week and still work out with friends.  On top of that, I take rides on my motorcycle and visit family. I still have fatigue and I sometimes nap a lot still as a result of  the side effects of Zelboraf but I no longer have any evidence of disease.

Pursuing a clinical trial was scary at first but really my only option.  My only option turned out to be the best thing for me and for my family.  I hope my story will inspire others to keep an open mind and to hope for the impossible.  Hopefully this will help others see that some of what the doctors do does help for the better, I don’t know?  Well we all know this is the one club no one wanted to join, but we are in this together and tomorrow’s a new day!!!!

Still thriving as of July 22, 2015.

This abbreviated story of a melanoma cancer diagnosis and clinical trial experience which spans multiple diaries and is available on www.TreatmentDiaries.com.  Sharing your story is empowering.  Join us for completely private and anonymous exchanges about your health.