Partners Archives

Head and Neck Cancer Alliance

HNCA provides educational, financial, and peer-to-peer support for head and neck cancer patients and caregivers, invests in research in head and neck oncology and educates the public about the disease process, treatment, and prevention of oral, head and neck cancers.

AceCancer

AceCancer‘s mission is to empower all cancer patients to be their own best advocate to improve outcomes. You can manage your cancer journey with AceCancer by tracking key health indicators, logging symptoms, and setting up an assistant to keep your personal community and doctor informed.

Colon Cancer Coalition

The Colon Cancer Coalition‘s mission is to empower local communities to promote prevention and early detection of colon cancer, and to provide support to those affected.

FORCE

FORCE improves the lives of the millions of individuals and families facing hereditary breast, ovarian, pancreatic, prostate, colorectal and endometrial cancers. Their community includes people with a BRCA, ATM, PALB2, CHEK2, PTEN or other inherited gene mutation and those diagnosed with Lynch syndrome. They accomplish this through our education, support, advocacy and research efforts.

Real Stories of Lung Cancer

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

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.

“Well, You Don’t Look Sick”

A Phrase Commonly Heard by MPN Patients

 

"You look fine to me!"

“You look fine to me!”

(Editor’s Note: This post was written by PV patient, PEN Advisory Board member, and PV Reporter founder, David Wallace. The post was originally published in the PV Reporter.)

Isn’t it amazing how well we look?  In a group gathering of MPN patients you will see very few wheelchairs, walkers, canes, portable oxygen tanks or other medical devices required for daily living.  Behind the facade of  “well-appearing” individuals, we silently suffer from a long list of symptoms including:

  • Fatigue, the #1 complaint and it can be debilitating at times
  • Pain (which can manifest itself in bones, joints, abdomen, back, arms, legs….and the list goes on)
  • Itching (more formally called pruritus in the medical world)
  • Headaches
  • Gout
  • Neuropathy
  • Dyspnea (a fancy medical term for shortness of breath)
  • Constitutional symptoms
  • Night sweats
  • And the list goes on – more symptoms here

I doubt there are many among us who have not heard family or friends utter the familiar phrase“you don’t look sick.”  Not really something we want to hear as it diminishes the “quality of life” struggles we go through living with MPNs.

Living in the “World of the Well” and the “World of the Sick”

MPN puzzle

Human Jigsaw Puzzle

Although we walk proudly in the “world of the well”, many of us live in the“world of the sick” or perhaps bouncing between the two worlds depending on our blood counts, spleen size, level of fibrosis or other intangibles.  Almost like a “dual citizenship”, we stand among the chronically ill.  Recent estimates put Chronic Illness at about 50% in the United States.  Many myeloproliferative neoplasm patients suffer from multiple symptoms turning us into “human jigsaw puzzles” waiting to be put together by doctors who frequently disagree on a standard course of treatment.

The Spoon Theory

Why all the ramblings about symptoms and issues we all know?  The above is a preamble to a post I read recently called the Spoon Theory by Christine Miserandino.  She suffers from Lupus and provides an outstanding narrative on living with a chronic illness – using spoons as an analogy for how much energy she can expend in a given day.

While Lupus in not an MPN, the article stands as a common thread for all of us who live with “invisible chronic illness.”

The upside: live every day to the fullest!