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Marion,
Thanks for your response.
I am not an expert in nutrition by any means, nor am I a ready to bypass all medical approaches in lieu of a holistic approach. But I have read enough now to know that nutrition and diet is a factor even though you don’t hear that directly from oncologists. I believe medicine and nutrition can work in concert.
When Lynn was diagnosed, we looked everywhere for help and guidance. The guidance on the medical side, as I believe many of us have found, is only that – guidance. With this disease, it seems each person is (at least) slightly unique, i.e. what works for one may not even be a consideration for another. Adding to that, it seems each type of cholangiocarcinoma is different. Even with all the experience and knowledge of this community, there are few “standard” approaches.
I believe the body’s natural ability to fight all diseases is being hampered by the poor diet – for many of us – in the United States. I have learned so much about the foods that promote natural immunity v. the foods that add toxicity and make the organs work harder.
In summary, for us, it will be a combination of diet (plus exercise) and standard treatments to fight Lynn’s disease. As much research as I’ve done regarding chemo, radioembolization, targeted therapies, and immunology (and I am still naive), we have equally researched the benefits of food types, processed foods, etc. And just like there is no clear path regarding the medical options, there is no single plan regarding nutrition.
Chemo and radiation are not the answers but they do provide a way to extend time while better medical options become available. Nutrition and diet can also provide optimism and hope as they focus on our body’s natural ability to develop immunity.
Hoping to hear from others.
Take care,
CarlThe initial post did not get a response. Probably too confusing. I’ll try again in a brief question…..
Do others have comments on the impact/importance of nutrition in dealing with cholangiocarcinoma ?
Thanks.
Clawler,
My wife was diagnosed in mid-April with non-resectable ICC which included multiple tumors in the liver, including a large mass in the middle, and lymph nodes outside the liver.
We are on cycle 5 of Gem/Cis treatment (2 weeks on, 1 off per cycle). Her initial scan after 3 cycles showed improvement similar to yours. So far she has tolerated the chemo well.
We live in the Allentown, PA area so we are in your region. We have used Fox Chase and Sloan for second opinions and are interested in Penn as another resource in this area. I’d like to know more about penny’s radioembolization. That appears to be a viable option after the Gem/Cis Is done.
Send me an email if you would like to talk further, share experiences going forward, etc.
Carl
I don’t know if I can answer as a general rule, but can absolutely answer it is a fast growing, aggressive cancer in my experience.
When my wife was diagnosed in mid April with ICC, it was already very involved (multiple tumors within liver including one very large tumor and lymph nodes affected). But three weeks later her pain was so bad we had to admit her to the hospital. The CT scan taken at that time was very different. All existing tumors had grown and new tumors were noted. We ended up canceling a second opinion consult visit because we needed to start chemotherapy right away.
Carl
Thanks for the replies. The reason the doctor gave us for stopping after 8 cycles was because of toxicity to the kidneys. She said that all the platinum based drugs eventually can cause damage to the kidneys and she would rather stop the Cisplatin after the recommended 8 cycles than risk the possible impact on the kidneys.
And Dorien, the 8 cycles, or rounds, refers to 3 weeks (2 chemo weeks and 1 recovery week) for 8 consecutive time periods.
Thanks again.
Porter,
I want to add that my wife’s diagnosis in April 2013 was similar to yours. And like you, she is young and healthy. She had multiple tumors, including one large tumor about the size you have. She also has lymph nodes impacted. Her liver was so damaged that we weren’t sure she would even get chemo. But after 3 cycles of Gem/Cis we have seen reduction in the size of the liver tumors and the lymph nodes. The doctor was quite pleased and suggested further chemo cycles since it was proving effective.
If you can handle the Gem/Cis, this combination has become the standard initial treatment plan for non-resectable bile duct cancer. For my wife, the side effects are fatigue and nausea, but both are manageable.
You already have two major factors in your favor: your health and your desire. Both will be important as you begin this journey.
Keep up your health. It is important you stay physically strong and active. We also made nutritional changes to my wife’s diet. We removed a lot of processed food and sugars – we figured the liver has enough work to do fighting the cancer and dealing with the chemo, it didn’t need to process more toxicity.
Keep a positive attitude. Reach out to family and friends for support. They will want to help, but sometimes don’t know how or don’t want to impose. Having the positive attitude will get you through some tough days.
Wishing you success as you go forward.
Carl
Sandy,
I agree with Lainy’s comments above and also want to add that if I can help in any way, I would gladly do so. The best help I can provide in the immediate mode is to tell you this community is behind you and will help get you through this new situation.
All the best,
CarlGood day,
I am bringing up and older post to ask this community if there have been any further developments or personal experiences using Curcumin supplements ?
My sister-in-law has a colleague who is a scientist in the medical research field. She suggested my wife could benefit from taking a curcumin supplement. She suggested Meriva, a bioavailable version also know as ‘curcumin phytosome.’
We are going to pose the question to our Oncologist since Lynn is currently on the Gem/Cis regimen. In another post from last year, Percy provided a link to an article which suggested they could work together.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9707Thanks, in advance, for your comments.
CarlDenise,
My personal experience with my wife’s ICC is, once the tumors get a stronghold in the liver, they grow at an alarming rate. I do support getting second opinions but know time is really of the essence. Also, my experience is both of the regional cancer centers we went for second opinions (Memorial Sloan and Fox Chase) supported the recommended treatment plan (Gem/Cis) as the first course of treatment.
Carl
Pam,
What a lovely, heartfelt post. The special bond between mother and daughter is clear in every word. Thank you for continuing to share your expression of love for Lauren and for allowing us to be part of this difficult time you are going through. As you said, this is a special place with amazing people who truly care.
Carl
Thanks to both of you for your insight. Especially about the challenges of the surgery. And we do feel that staying the course right now is a good plan.
We saw Dr. Denlinger as well during our initial set of second opinions (we went to both Sloan and Fox Chase). I was very impressed with Dr. Denlinger. I was even thinking of contacting her and sending her the recent CT as well.
We actually felt good with both second opinions. We continued with Sloan because we felt they were able to offer more options. And we are still comfortable with Sloan. As mentioned, I guess I am too anxious. I want to be ready for the next phase – probably the engineer in me.
Hope you have a great day.
CarlSusan,
Our best to you and your husband as you work through both the medical and financial challenges.
Carl
