Treatment Has Begun // Week 1
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Joe….there is a good chance that your Mom is not able to tolerate this particular chemo regimen. I hope you can speak with the oncologist and ask whether this regimen is simply too harsh, what other regimen could be used and perhaps revisit the clinical trials solution.
Crossing my fingers for the platelets to rise to an acceptable level real soon.
Hugs
MarionJoe
Our thoughts and prayers are with you and your mom.
Dear try to take one minute at a time and savor it to the fullest.
You are right, good nutrition (vegetables, fruits and whole grains, a little) can go a ways to help with keeping your mom up and fighting. The darker the color of vegetables and fruits, the higher the antioxidants to help fight the cancer cells. But then I am a nutrition advocate.
We use hydrogenized water to reduce oxidative stress in the cellular level.
Ask her doctor.
Hang in there. If you hang in there, she is likely to do so too.
Love and spiritual strength to you both.Hello Joe,
I feel for you and understand the complications, questions, frustrations. My mom has intrahepatic cc diagnosed 2 months ago. She has chronic anemia before the CC, so already gets transfusions, low platelets and she is not even getting chemo. We decided not to do chemo for this reason. Is there a way for them to adjust chemo and make it less harsh? or choose a different kind? Is radiation an option in place of chemo or would that make a difference?
I also thought the diagnosis was wrong or some sort of mistake or knowing that it is rare and hardly any information for doctors and they are learning too, that this is confused with something else or not as severe as they put it. I was tired of hearing the word cancer, awful tumor, will get worse, or all the negativity all in one month!! I got to the point wondering if there will be hope, but here I am and taking it day to day.All the best for you!
UPDATE:
Given her low platelet numbers they have now given her about 4-5 bags of platelets to replenish. Luckily she’s been an out patient during this time but her numbers seem to be sitting at 17 with all the bags she’s been given….this seems to be a trend for her given the Gem/Cis. She’s heading back into the hospital again for another bag now which will be 3 days in a row for her….
Is this common? Should I be worried that her body/blood can’t handle the chemo?
Any insight would be great. Thank you as always!
JoeThank you Marion. Problem is the already cut the dose in half since the first round of chemo put her in the hospital.
UPDATE:
Today she was back in the hospital and her platelets got down as low as 12…she’s going back tomorrow for another bag of platelets. Starting to think her body can’t handle chemo at all….is this much blood work and hospital/doctor time outside chemo within the first 1-2 months of treatment common?
Thanks
JoeJoe……at times, chemo can be adjusted to a lower level. You should know more following your Mom’s blood transfusion. Stay strong, this may be a bump in the road only.
Sending a tidal wave of good wishes your way,Hugs
MarionUPDATE:
My mother had blood work done yesterday to check her levels and as I had feared they’ve gone down to dangerously low levels once again. Her platelets which read 126 on Dec 30th went down to 68 on Jan 6th is now down to 16 as of Jan 10th. I’m really starting to fear that her body can’t handle the chemo and that we’ll be left with little to no options. Her spirits are low but I keep reminding her that although the numbers read the way they do if she feels good and mostly normal that, that is really the only thing that matters. She’s going into the hospital today for more blood work and potentially a transfusion.
Any suggestions or questions I should be asking the doctor?
Thanks as always for all your support and feedback. My mother and I appreciate it more than ever!
JoeI’m on 2nd leg of 7th round of chemo gem/cis and was told there are no “bags of platelets” that they can give. I’m confused.
Janet
UPDATE:
My mother had a follow up with the doctor on Friday and as they suspected her blood levels had gone down. Platelets were 126 the previous Friday and this Friday down half of that to 68. Insurance has yet to approve the red blood cell shot procrit and until she’s checked on again Tuesday they won’t schedule for more chemo….all of this has kept my mother’s spirits a bit shaky and have urged the doctor not to emphasize so much the numbers themselves but more so her comfort physically. On a positive note he did mention that the test they ran that measures the level of secretions given off by the tumors was shown to be reduced by 20% overall which makes us hopeful that the chemo is doing its job.
Other than that I’ve got my mother on a dab of pure CBD which we put on a cracker along with a CBD vape pen in hopes that it also has a positive impact on the cancerous cells.
We’ll know more Tuesday when she has another blood test taken. Thanks as always for all your love and support. I look forward to potentially seeing some of you at the forum next month in Salt Lake as I plan to come ready to chat CC.
Much love
JoeThanks Lainy. I do alright in the kitchen, good enough to keep the healthy food on the table.
UPDATE:
My mother has begun her second cycle of chemo today which is just the (gem) alone. They did blood work just now and her platelets dropped in half since Friday…has me very nervous since that was the reason we ended up in the ICU for a week last time post this (gem) only chemo. The doctor said they plan to push forward with it and have cut the chemo dosage in half if not more to assure no problems arise. I sure hope we don’t end up in the hospital again with the same problem, that setback was hard enough for my mom I can’t imagine what her spirits will be like if she haste do it again.
Note: Apparently my mother has particular antibodies that aren’t helping with the platelets, or so they say which forced them to get a particular blood type shipped to the hospital when she was in the ICU for a week….
Here’s to hoping for the best with this round of chemo. It has me very scared that if her body doesn’t take to this again that we might be left with little to no options…Has anyone heard of this happening and if so has any resources or tips on how to combat it?
Thanks so much for all your thoughts and prayers.
Much love!
JoeDear Joe, just returned from a week away and was so happy to see how your Mom is doing, YEA! I bet you are one heck of a good cook. Keep the good news coming and wishing a great outcome on Monday!
UPDATE:
Today we had a DR visit to check blood levels post our second go at chemo and it was a good visit. Platelets were at 278, WBC were normal but hemoglobin was at 7.8. Regardless of them being a tad lower than where they’d like we’re continuing with chemo scheduled for Monday but the doctor is cutting the dosage in half to insure that my mom doesn’t end up back in the hospital for a week. We’re also waiting on insurance to OK the red blood cell shot, as of now they haven’t but after today’s reading I’m hoping they will. The doctor is also doing a blood test to specifically look at the tumors to see what kind of activity is going on since we probably won’t be doing a CT scan for another 4 weeks.
Overall sprites are high, cooking my mom anything with iron in it to help with her red blood cells. Eggs, Greens, Nuts Etc
More updates to come post chemo Monday. Thanks again for all your support and love. It means the world to us!
JoeDear Joe,
I ‘m glad you had a good Christmas but understand the mixed emotions. My mother is doing great, but my father was given a prognosis of a few months in early Nov. for a different cancer. I took my parents to Christmas Mass in the morning and I know there were times we all were fighting to hold back tears. The whole day was a mixture of laughs and tears, but still very special. We took many photos and I gave Dad a voice recorder so he can record some of his memories that he would like to share with us ( he had mentioned this desire to the hospice nurse last week).
We are giving Dad an Isogenix Pro shake every day in addition to meals to help keep his weight up. And, I know others have mentioned things like Carnation Instant Breakfast.
My thoughts and prayers are with you and your mother Debbie,
CatherineJoe…in regards to your other post: It is impossible for your Mom to receive a liver transplant. Stage IV disease means the cancer has spread and a transplant would do more harm than good. But, that doesn’t mean that other treatments won’t be effective and she can be treated as someone with a chronic disease. Joe, I meant to ask you: does your Mom have medical insurance?
Also, it is unlikely for your Mom to be jaundiced at this time. Intrahepatic patients rarely have yellowing of skin due to bilirubin buildup. Hilar (perihilar patients are more prone to yellowing due to a blockage somewhere in the biliary tree.
End stage liver disease (due to cirrhoses) can cause yellowing, but given your reports it does not appear you should not need to worry about this.Please know that I am not a physician, hence everything written by me must be confirmed by a health care member.
You are doing great, dear Joe, nothing prepares us for a difficult cancer such as this. Try to stay positive as best you can.
Tons of hugs are heading your way.
Marion
Joe…..so happy to hear of the wonderful Christmas you had. How is Mom doing following today’s treatment?
There are many publications for healthy eating. You may want to takes a look at this link:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=14036Mainly though, it helps to build up her protein intake by eating lean meat, fish or eggs. Some like store bought shakes such as Carnation Instant Breakfast and add additional Whey or other source of protein. Also, Boost has been used and is continued to be used by many.
Personally, I think she should eat whatever her heart desires and hopefully with tons of calories. Does she like ice cream?
Healing thoughts are coming your Mom Debbie’s way.
Hugs
Marion
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