First time posting
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We had a lab check today and labs haven’t changed much in 8 days. White blood cell count is really low but not critical. Next Tuesday starts another round of chemo.
Mary, thank you for the links, they were very informative and helpful. Lots of things to consider.
Positivity, thank you for the smoothie tips. He does love smoothies, he has to drink them slow and let them get warm because he has cold sensitivity.
Melinda, I appreciate your input as well. Thank you.
We will have to decide sometime in the next couple weeks if chemo is just too hard on him. If it’s useful then ok but if not he feels it’s not worth it. Another concern is his dizziness and double vision when he gets tired. Also it seems his reflexes are slowing way down. Walking, talking, are slow.
Tomorrow, August 2, is our 42nd anniversary. I’m hoping he has a good day!!
HopefulDear Hopeful,
I have asked Karen our moderator to respond on this subject, as I know she has some good resources related to cachexia, nutrition and palliative care. I am sorry this is such a hard time for both of you. Sending all good thoughts your way……Melinda
Dear Hopeful,
I totally understand your experience, and as stated above there are many unexpected events and always hard to determine what will happen. Weight loss and appetite suppression is a given and we are always grateful if my mom just eats something without complaining of being full or will get a stomach ache. I am trying the plant based smoothie drinks (forgot name), similar to Ensure, but it may be a little better. Also, yogurt with hemp seeds for extra calories. Again, it’s still a challenge, but always try to see what to add to the diet as the person’s taste buds also change. One month they may like something then the next they hate it. We are relying on palliative care as no treatment is feasible at this point. You should look into support care for his symptoms and question if the chemo is very useful or more draining for your husband. Someone mentioned on here about a feeding port if one is having extreme difficulty getting nutrients. Has this been discussed?Dear Hopeful,
I am sorry to hear that your husband is not feeling well. You mentioned your oncologist seemed somber. I was wondering how detailed he or she is being with you, in outlining possible scenarios. Sometimes doctors have to be pushed to give this sort of information.
Exploring palliative and hospice options early can be helpful in making decisions. With this cancer presenting so many twists and turns, one has to prepare for a variety of possibilities. I know this is hard when just getting through the day-to-day can be draining. Even while hoping for the best and staying positive, however, it is still good to think about future plans – if you think through and consider care options that turn out to be unneeded at this time, no harm is done and you are more prepared for whatever the future brings.
If you have not found this posting yet, our board colleague Rangani posted some links to excellent materials on end-of-life care for cancer patients. I copied the posting below – his message has various links. Even if this information is not needed at this time, it may still be helpful in considering possible future situations.
My thoughts and prayers are with your husband, you and your family as you navigate this most difficult time. Hopefully his current treatment will show positive results. Please keep us updated.
Regards, Mary
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=105261#p105261
Hello to everyone. It’s been awhile since posting an update, partly because it’s been a crazy hectic month. My husband has been on the Folfox/5FU since beginning of May. Had a scan at end of June which showed no shrinkage of tumors. We are continuing with the same chemo regimen through August with another scan after that. He has lost 22 more pounds since May. We are learning more about cancer cachexia which is the main reason for his weight loss, not only weight loss but almost all his muscle mass. Extreme fatigue is also a constant. He sleeps a lot and eats very little. From what I’ve been reading about cachexia it does not sound very encouraging. Any helpful hints or info would be greatly appreciated. We’re ready for the hard facts, I’m thinking this is the beginning of the end stages, especially since this is the first time that our oncologist seemed very somber. We need to know reality since we have much business to attend to. We’re trying to keep a positive outlook but………it’s hard.
Hopeful
Positivity…..Thank you for your response. We will see what the scan says on Monday. On Tuesday we have our consultation with the oncologist. I’ll have my list of questions, including a question about keytruda, and yes I’ve read the latest posts on it and it sounds like a good thing! We’ll be asking also about getting in contact with the reps from MDAnderson for tissue testing and trials. Will keep you updated. I do appreciate any input…..this is the place to be able to glean information and encouragement from people who have there and understand.
Thank you,
HopefulLinda,
That is a good decision obviously if the chemo at some point doesn’t work you don’t continue, especially if quality of life is a huge issue. Everyone should get tissue tested as Marion has stated to determine molecular alterations, with hopes of a target therapy that has success for that particular change. We have to keep trying and most important work through the symptoms or seek palliative care. Did you read our latest posts on Keytruda? Again, something worth to be familiar and varies from patient to patient.hopeseeker..There is no curative drug for our cancer, hence at one point drugs resistance will occur. When that happens, a second line of treatment will be considered. Therefore, it’s best to lign up the next course of action in advance, which could be a molecular targeted agent or another chemo drug. I believe that everyone should have their biopsy tissue tested for DNA/Molecular alterations, preferrably at diagnosis or at any other time.
Hugs,
MarionHopeful,
My MIL just had her scans and the tumor in her liver had shrunk some so that was good news for us. I think I read that your husband is on Eloxatin (oxaliplatin)? That is what my MIL is on and it has shrunk the tumor so I hope for a good scan for you all too.
I don’t know much about all of this at all and just posted a topic myself about tumors shrinking. Do they shrink and then get resistant or do they continue to shirk increasing the chance of survival and quality of life?
These are questions I’d love to have answers too also. Im not sure what immunotherapy options are, but I hope you get some answers along with good scans and reports!
Hopeseeker
Hi everyone. This is Hopeful (Linda) posting. Today my husband goes for routine lab work. Monday he goes for scan. He’s made up his mind that if the scan shows no improvement or shrinkage of his huge tumor then he wants to quit chemo. His quality of life is , well, let’s just say there is no good quality at all. He can hardly eat anything, continues to lose weight, sleeps a lot and is nauseous almost constantly. If you read my June 15 post I talked about the type of chemo he is on right now. I want to ask about immunotherapy…..if that might be an option for him. And we are still hoping for the Y90. I hope the oncologist will be totally honest with us about what he will see in the upcoming scan. If Y90 would not help at this point, then don’t give us false hope.
We’ll see how his labs come back today and what the scan results will be next week. While we wait are there any thoughts from anyone about immunotherapy options?
Would appreciate any input…..
Thank you,
Remaining hopeful!Paulsgirl,
Good luck with your surgery. As you will find some CC patients found their tumor by chance in that another health condition prompted further investigation into this diagnosis.Dear Paulsgirl,
Welcome to our group. I hope your surgery goes well and is effective in destroying all the cancer cells. I’m sorry that you have reason to join our group. However, the early detection and small tumor size bode well for successful treatment. Please keep us posted as you recover from surgery and are feeling up to posting.
Debbie
Dear Paulsgirl…..best wishes for you tomorrow for your surgery. Praying for it to be a success for you! Hang in there and let us know how it goes!
First time posting. I found out I have this cancer quit by accident. I was diagnosed with diabetes in October of 2016. I began having pain in my back at the same time.
In February I went to my GI doctor, I have Gerd as well. I was having increases heartburn. He recommended a CT scan of my pancreas just to make sure nothing was missed. That test showed some growths in my liver. I then went for an ultrasound which confirmed a tumor.
Initially, they thought it could be a melanoma as I have a prior history of that.
It took awhile to get biopsy due to the location of the tumor. It’s lying under my diaphragm so every time I breath, my diaphragm covers it.
The first biopsy didn’t work due to the location. Doctor was afraid he may puncture my lung. I then found an oncologist with the help of my daughter. He sent me to an interventional radiology at University Hospital in Cleveland, OH. That doctor was able to get the biopsy. Soon after, the oncologist called me. He said it was not a melanoma at all but cholangealcarcinoma. He sent me to a surgeon who is the head of the liver transplant team at UH.
I will be having surgery tomorrow morning. Doctor recommended an ablation. Luckily, the tumor is small, 2.7cm. I was lucky to have found too have found this at an early stage. It in iterhepatic in a bile duct in the 8th quadrant of my liver. My doctor says this is the best treatment for me since the tumor is still small.
So, I start my journey with the cancer. I’m positive and hopeful. I feel I have a good surgeon and a good oncologist. Wish me luck!
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