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Willow, I will look for the email and let you know how it goes, it is a very exciting trial and all the news/study results for melanoma y were very good. Immunothrapies and biotherapies are very cutting edge and every oncologist I have talked to has been very excited about the possibilities.
The study MDs also are aware of all the supplements and food Don is taking and have no problems with anything. And as I said it seems to be helping. It also is a way to get hydration into him which is also another major struggle.
As always thank you to everyone.
Deborah
Update:
I wanted to touch back on the cachexia thread and share a nutrional website I found on wasting syndrome out of the UK. I have been making the Dragon Slayer Shake for Don twice a day and he is up 10 lbs and holding steady. Eating continues to be difficult for him after all the taste changes and digestive issues brought on by various chemotherapies as well has adequate hydration. The link is below:
http://www.canceraction.org.gg/therapies-and-recipes/super-nutrition-recipes
While not all the ingredients maybe familiar you can get most in a good health food store and there are substitutions you can make. For example for the triglicerides we are using coconut butter. For us it is healthy chemical free Ensure/Boost and seems to really be helping.
Don is starting a clinical trial ( first dose today) for advanced solid tumors. The Xeloda he has been on according to the scans isn’t effective so we are exploring new territory. This is a biotherapy aimed at assisting the body’s own immune system and we are very hopeful. It has been successful for metestatic melenoma and now is being explored on other advanced cancers. The link is below:
http://clinicaltrials.gov/ct2/show/NCT02054806?term=MK3475&rank=8
Everyday is a new day, we are strong and positive and chanting like crazy!!!!
Deborah
Update….
Well starting our 4th round of Cis/Gem on Monday. So far Don is tolerating the treatments fairly well, with fatigue being his biggest side effect. Also his Pet scan showed marked response to treatment with all tumor sites and lymph node activity being smaller and less hot. Yipee!!….even the MDs were happy to see it.
However Don is continuing to lose weight, down to 158lbs. Keeping him hydrated is a challenge and I know that is part of the problem. We are continuing to juice and do smoothies as he can really only tolerate one meal a day usually lunch, the rest liquids and smoothies. I am wondering if this is because of the type of cancer CC is and his absorption of nutrients, fats, calories is being affected? We add protein powder to everything and keep a constant supply of ice cream for the fat, he has even started eating a little meat once in a while for the calories and fat.
If the chemo is helping but yet his body is still wasting away….this worries and scares me as I feel that no matter what I feed him it isn’t enough.
Hoping for suggestions and thank you.
Deborah
Again thank you for all the info and advise. Our biopsy showed that it is definitely CC in the supraclavicular node and with all his other lymph node involvement this makes his a stage 4. I have asked about interventional radiation and am still working on those answers. I also have been looking at clinical trials but it seems his staging excludes him from most.
As far as the constipation he is already on the ducolax softener/laxitive combo pill twice a day as well as aloe vera juice, flax seeds in smoothies and an occasional epsom salt/water treatment. He is doing much better on that front. We will look into acupuncture too, I have heard great reports on it for symptom management.
Don will be starting chemo on Friday, he is scared but glad to be moving forward. The waiting and no action is the hardest.
Everyday is a new day, we are strong and positive and chanting like crazy!
Thank you everyone for all your encouragement and helpful advice. We are currently on our second opinion with a possible further biopsy at Stanford on Friday, depending on what the subclavian biopsy taken yesterday shows. They are trying to determine if he actually has CC metastasis or some other lymphnode involvement so as not to rule out a possible resection.
Don is on oxycontin 20mg BID for pain and seems to be better. But he is battling constipation and nausea as well. I feel like I am constantly giving him one drug or another to battle side effects. As an oncology RN I am seeing this from the other side and am trying to bring all my knowledge to the table to help him as best I can. He does do better with small frequent meals as suggested, but trying to catch him when he feels like eating is tricky. Smoothies and soups are working best so far.
Does anyone have any experience with acupuncture for cancer pain management? Don really hates being on the narcotics as he feels groggy all the time and can’t function like he would like to, as well as the nausea/constipation issues that come with narcotics. Quality of life is everything right now while we are figuring things out.
Thanks for listening.
