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Toongirl,
Sorry I just saw this. I will add more at another time, but I can tell you this. In our experience, changing your diet to counter the cancer is challenging, but also very rewarding. It does take a lot of research on the subject of nutrition and cancer.
You won’t get this advice from the doctors. They’ve been trained on the side of medicine. They have limited foundation in the area of nutrition.
Cute sidebar however…..One time during our meetings with our oncologist we had good CT results. We talked about how we added cloves of garlic to Lynn’s daily diet. Our oncologist smiled and said that we should “create a medical name” for it and publish a book. i.e. if the medical world isn’t buying in to nutrition, make it a medical topic. The end of this story is that Lynn’s medicine list at the doctor’s office now includes garlic. Pretty cool.
My wife has completely transformed her diet to eliminate all processed foods – not just sugars. She and my daughter, who I give credit for continued research on this topic, have developed a diet regimen that consists mainly of vegetables, fruits, beans (lots of spices for flavoring), fish and chicken. All organic. She is now eating 2500 calories/day, and everyone is a value added calorie. No red meat – too hard on the liver to deal with. Everything is based on nutrients and reduction of toxins to the liver.
There’s lots more to the story, but I will tell you we believe the chemo helped ONLY as much as the modified diet. It was definitely the combination that provided her with the positive improvement.
And attitude accounted for 50% of the improvement.
I hope you have a Merry Christmas,
CarlEvan,
I don’t understand the 2 week off routine. Our cycle (we did 8 of them) was 2 weeks of gem/cis and 1 week off. I understand that regimen to be the “standard” protocol for treatment. I would encourage you to ask those questions of the oncologist. There are many people connected to this foundation who have gone through the 3 week cycle.
If they provide a specific reason why your case is different, ask them to explain why – write everything down – and come back to the moderators of this board with those reasons. They have lived through so many situations that they will most likely be able to quickly provide feedback for you – either way.
If they say it takes two weeks to recover the white/red blood cells, platelets, etc. that is not true. They can give a shot of Neulasta after the 2nd round of chemo (in a cycle) and it will help rebuild the immune system.
Constipation may be an issue. It was with us. Between chemo, pain meds, and nausea meds, they all work against the normal system. So try to stay ahead with whatever medications you need. Ask the oncologist about this. During these cycles, our daily constipation meds were 6 Senecot-S tablets, 1 or 2 doses of Mirilax, and Milk of Magnesia when all else fails.
Exercise. We found exercise (walking mostly) really helped right after chemo. It seemed to help Lynn feel stronger after the chemo.
And above all else, do not hesitate to ask any and all questions of these terrific moderators. They will guide you to the best of their ability.
Carl
Gavin,
We are with you as you remember the wonderful memories with your father. I am sure you have so many terrific moments to remember.
A father-son bond is something that one lives every day of their lives.
My best to you,
CarlI am sorry to hear you’ve had such a struggle with chemo. I hope this doesn’t sound condescending, but have you discussed this with your oncologist?
In our experience, and I would guess others have had the same experience, sometimes if you don’t ask, they won’t tell…..
I don’t know if it is an insurance thing, a medical protection thing, or something outside of my thought process, but I do know there have been several situations where we were ready to stop chemo – told the oncologist – and the response was “Oh, we can do this to help”. For example, after the first 6 cycles of Gem/Cis (as you know very toxic), my wife was in such pain (nausea, listless, no appetite, etc.) that we cried together while deciding to stop chemo.
We meet with our oncologist, explained the situation, ans was informed ” Well we can put you on Emend for nausea and steroids for physical strength”. Duh????? Where was this before ?I am suggesting do NOT accept that you struggle with chemo until you’ve asked (then challenged) your onc. to explain to you why they cannot help you deal with chemo further.
Having said that, my wife benefited from the chemo regimen – to which we are very grateful. So you also need to make sure it is effective before continuing with this challenging process.
My best to you.
CarlPercy,
You are a great person for all you’ve been through and your willingness to help others. You’ve documented your personal experience with such great detail that we all all can learn from it. You’ve created what has become the standard resource for chemotherapy options, and more.
In the language of the Bears…..”You da man”…..
CarlI struggle to call out one moderator because you are all so very special to each of us. As a group, I hope you feel proud of how much you help people desperately looking for help, advice, guidance, condolence, and more.
I echo others comments regarding Marion. I have no idea how many hours are in each of her days because she does more in 24 hours than is normally possible. She truly is the driver that moves this foundation – not just this forum.
I have had some very personal, private interactions with this foundation. I won’t go in to details of the topics. I only bring it up because Marion was, and has always been, the steady influence who always tried to find the best solution for everyone. That is who she is and what she does.
I salute all the moderators. I also acknowledge those special persons on this forum who may not be moderators, but spend so much of their time trying to add value to others. What a special group.
My thanks to all of you.
CarlI struggle to even get into this mix but, for many personal reasons, I feel I must respond.
First, I want to say thank you to all those who try to add their input to benefit others. The moderators are truly caring people who clearly would do anything in their power to help. And it’s not just the moderators. It’s so many people who have “been there” and want to try to help others.
Second, I feel Dorian’s pain. It is challenging to find answers – or even a path forward – by using this forum. Yet there is a mountain of information and a plethora of experiences. The hard part is digging through all of it to find what is truly relevant to a particular patient/caregiver.
This forum is useful, but it has become the primary vehicle with which to seek answers. And that is not the structure nor design of a blog (i.e. this forum). Where else do you peruse through hundreds, if not thousands, of personal messages to find an actual answer to your questions? It’s not the people, it’s the tool that causes frustration.
I know the foundation is working on an improved website and I eagerly await the revision. I also understand that, in some cases – myself included – we are searching for immediate solutions. This foundation, and this website, has become the standard “go to” site for guidance by Cholangiocarcinoma patients and caregivers around the world. That is a huge challenge – keeping ahead of the information associated with CC, and then providing it to everyone in a consistent manner.
There are no easy answers, but I will still come to this forum in the short term to look – even if that doesn’t happen daily. I know I will miss out on possibly key information on those days where I cannot log in – and I wish there was a better way.
I also know I truly admire and respect every person who is willing to come here to post their personal information so it may benefit others.
Carl
Mary,
Like others here, I hope you have some good results from the Gem/Cis regimen.
You’ve received lots of advice regarding constipation. I would only add to stay with the routine that works for you because this drug combo really does impact constipationOn a different topic, not sure if you are experiencing nausea. As we went through more cycles of gem/Cis the nausea and sickening feeling got worse. Our onc. eventually added Emend intravenous as part of the infusion. It made a huge difference. If you are not on Emend already, you may want to ask about it. If we had known its value (we weren’t aware of it at all until the doc mentioned it), we would have asked to start earlier.
And, if not already getting the shot, please ask about Neulasta to improve your immune system’s ability to manage the drop in white and red blood cells. We would get Neulasta the day after the second infusion of gem/Cis.
Carl
We went through 8 rounds of gem/Cis. We saw good results. Even with the good outcome, our oncologist suggested taking a break from the combination and move to just gemcitabine as a maintenance plan. Her primary reasons, which were confirmed by our second opinion doctors both at Sloan and fox chase, were 1) the long term effects that cisplatin can have on the body, especially the kidneys. And 2) to give the body some time to recover from the effects of the combined drugs. We just finished the first round (3 infusions) of gem only. So far it is much easier on the body.
Carl
Best wishes for continued success on your journey. 4 years is incredible in itself. My hope is you will continue to blaze the trail for others who you’ve already helped yet never met.
Carl
Hi Ceci,
A cycle for my wife was gem/Cis once per week for 2 consecutive weeks and then a week off with no chemo, I.e each cycle was 3 weeks duration with 2 infusions of gem/Cis.
And hopefully they are going to give Allison shots of Neulasta. This should occur after the second chemo infusion of each cycle. Neulasta counteracts the loss of white blood cells. It is basically a booster for her immune system.
Ceci,
My wife had the Powerport inserted into the main vein near the heart. It made chemo (just finished 8 cycles of gem/Cis) much easier to handle. No needles each time. I highly recommend asking about the port.
With respect to chemo, your daughter will most likely receive anti-nausea meds like Zofran right with chemo. For the next few days after each round, we used Zofran and compazine.
After a while the toxicity of the cisplatin was tough and the Zofran didn’t do it. Our oncologist then started her on Emend intravenously at the start of chemo. What a huge improvement that made. Please ask about Emend.
Good luck to your daughter.
Carl
