March 13, 2017 at 4:32 pm #93409
Joe, Is it possible to give your mom a break of 1-2 months from chemo to help her body recover and build up her immune system? You can do this with top nutrition and immune building supplements and extracts. Maybe she can’t tolerate it anymore and needs to take it easy. This is a suggestion, but a personal choice. Definitely research and request clinical trial options. As you know chemo reduces immunity while trying to kill abnormal cells. Can you ask the oncologist what would happen if you waited to continue on this regimen?March 11, 2017 at 11:49 pm #93408
My Mom’s platelets are still at 66 and they are pushing chemo to next week…I feel like this is the same drill as before and I’m starting to lose hope that this treatment is the answer as her body/blood levels don’t seem to be taking it well enough in order for it to do its job…..I’m really at a lose and becoming very depressed about it all. Is it time to start discussing clinical trials now? I truly don’t know what to do as it is so hard to see my mother like this. I feel so helpless.
JoeMarch 7, 2017 at 5:53 pm #93407marionsModerator
Joe……consider this a welcome break. Most likely your Mom’s platelets will recover for the next treatment. Sending tons of good wishes your way.
MarionMarch 7, 2017 at 3:56 am #93406
Thank you all for the notes.
My mom went to the DR today for blood work and her platelets have gone down to 66 so they won’t be doing chemo this week and have scheduled her for the 15th of next week. Hoping that this doesn’t set her back too much with this new treatment. She gets more blood work done Friday of this week.
Thanks as always for all the love and support!
JoeMarch 4, 2017 at 2:40 am #93405middlesister1Moderator
I’ve been MIA for a while. but came back and very happy to hear your Mom is doing well. best wishes to you and Mom,
CatherineMarch 4, 2017 at 1:57 am #93404marionsModerator
Joe….glad to hear of no side effects and hope and wish for the pain to subside real soon. Fingers are crossed and tons of good wishes are heading your way.
MarionMarch 3, 2017 at 4:25 pm #93403
My mother is 4 days in on the FOLFOX and so far so good. She is more tired than usual but no major side effects at the moment. She’s still experiencing some major pain in her abdomen and back which I sure hope starts to subside with the palliative chemo FOLFOX.
Next DR apt is set for Monday for blood work and next round of chemo Wednesday.
Thanks as always for your continued love and support!
JoeFebruary 28, 2017 at 4:46 am #93402
Lainy, Gavin and Ben,
Thank you all for your comments! Much appreciated and plan on looking into Keyrtuda a bit more.
Today was my mother’s first official treatment of the FOLFOX. Other than the hospital taking an extra 2-3 hours to get the treatment itself it was a good day for my mom and all of us. We’re praying that this mix of treatment will be one that her body can handle to help shrink the tumors. Thanks as always to all of you for your support. This site really has been a life vest for myself and my ability to cope with such a tough condition.
I’ll make sure to keep you posted with the progress. Her pump will come out on Wednesday.
JoeFebruary 25, 2017 at 11:01 pm #93401
Interesting post, since my mom is in a high inflammatory state, and possibly down the long road would consider prednisone. Keep us updated on how this drug is working. Did she get her CRP levels checked for the inflammation? If so, what was it?
All the best for your wife.February 25, 2017 at 3:10 pm #93400grsharpMember
Joe, I have used shark liver oil to raise my platelets. (Do a google search)
I do not have cholangio but my wife does.
She started on gem/cis for 3 infusions but stopped because liver enzymes too high. Later did radiation plus 5FU. She has now been getting an infusion of Keytruda every 3 weeks for past 6 months. She was diagnosed 11/2015 and has good quality of life up until the last few weeks. She is currently experiencing nausea and fatigue. Doctor started her on 60MG prednisone daily for 7 days to see if it will reduce inflammation as well as her liver enzymes. She has only been on it for 2 days but already feels better.
Although Keyrtuda is not approved for cholangio it might be an option.
Wishing you and your mother well.
BenFebruary 24, 2017 at 6:49 pm #93399gavinModerator
Real sorry to hear this latest news about your mum and the platelets. Please know that I am keeping you and your mum in my close thoughts and keeping my fingers crossed for her as well. Please do not give up hope Joe and you know that we are all here for you as well.
My best to you and your mum,
GavinFebruary 24, 2017 at 5:27 pm #93398
I am sorry and understand your situation. I wish oncologists would have various treatment options rather than the gem/cis combination which seems to be the first treatment of choice. How about chemo sensitivity tests? I thought these were meant to check if a treatment will work before giving it to the patient. This would prevent unnecessary chemo toxicity which also kills normal cells. I was going to ask this question the next time I see an oncologist. I know the tough road in making decisions and hoping it is the best decision. I am on the same path.
Have you requested for genetic mutation tests? Something that increases a probability of a treatment to be more effective. No matter what keep her on good nutrition even if they are small meals. Can you give her fresh veggie juices or supplements if she is malnourished? Obviously, if she will get more treatment make sure supplements are okay.
Did she reject the blood transfusion? Sometimes patients reject it if the blood is not tested for certain antibodies.
All the best!February 23, 2017 at 9:54 pm #93397lainyParticipant
Dear Joe, the best I can give you is to get another opinion. Gather Mom’s LABS and test results and just see what someone else would have to say. I would think the ONC should know about the low platelets and give you some advice. You might also go to our search engine and type in low platelets and read the posts that pop up as I know there are quite a few. Again hoping for the best for you and your Mom.February 23, 2017 at 8:44 pm #93396
My mom was scheduled for her first round of the new treatment of FOLFOX today but here platelets were only at 68 which is too low to administer the treatment. I find this odd since she has had chemo in weeks…..instead she got a blood transfusion and her platelets actually went down again after the transfusion. I’ve tried to get her to eat foods that are best for naturally producing platelets but she just doesn’t have the appetite for it. I’m hoping for miracles here and starting to get very nervous.
I was also going to post a note on the discussion board of the American Cancer Society to spread the word as best as I can as I feel like I’m running out of options. If anyone has any other suggestions I’m all ears at this point.
Thanks again for all your continued support. It means the world to my mother, me and family.
JoeFebruary 21, 2017 at 2:27 pm #93395lainyParticipant
Dear Joe, I can’t help with Chemo questions as Teddy never had it. I can wish your Mamma the very best as you never know when you will hit on that one cocktail that does the trick. Hoping you have some great news tomorrow for a new treatment. Hang in and hang on!
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