Treatment Has Begun // Week 1
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UPDATE:
We’re heading to the doctor tomorrow to discuss this next round of treatment
The FOLFOX regimen is comprised of
FOL – folinic acid (leucovorin) which is not a chemo drug
F – fluorouracil (also known as 5FU)
OX – oxaliplatin
I’m making a list of questions for the doctor before we begin this. Does anyone have any questions they think I should ask during the visit? I’m assuming I have most on my current list but would love to hear your thoughts prior to make sure I’m not leaving anything out.
Thanks as always!!
JoeJoe….my heart goes out to you. I have learned that brain metastases-derived from this cancer are very rare and only few cases have been reported.
The FOLFOX regimen is comprised of
FOL – folinic acid (leucovorin) which is not a chemo drug
F – fluorouracil (also known as 5FU)
OX – oxaliplatin
Is it possible to consult with another specialist?
Hugs
MarionJoe,
I am so sorry about the bad news you received. We just visited Dr. Philip Gold with Swedish Cancer Institute in Seattle for a second oncology opinion. He stated that if my husband was not successful with the first line treatment of gemzar/cisplatin, then the second line treatment recommendation would be folfax. He would recommend folfax for second line treatment regardless of the test results from FoundationOne genomic testing. We will review that recommendation with our local oncologist, who seemed more open to using the FoundationOne results sooner rather than later. I know each case is different, but I hope that info helps ease your mind.
VictoriaJoe,
So sorry to hear of this set back in your mom’s treatment but hoping that the new combo will be more successful. I don’t have any experience with these, but I’m sure others who have will be here soon with some helpful suggestions. Thinking of you all and hoping for the best results for you mom’s treatment. Update us as you can. We do care.
Hugs,
DarlaJoe, I am very sorry to read this news about your Mama. Like Beatriz said everyone is different and it is a matter of finding the right combination.
I am also a huge believer in listening to one’s gut. Above all else I would seek another opinion as different ONCs see different things and have other ideas. Hang in and hang on , Joe, you never know how strong you are until strong is the only choice you have, wishing the best for all of you!UPDATE:
Very Unhappy day….wish I had better news to report to everyone…..a call from the doctor confirmed that the GEM/CIS hasn’t worked…..we’re all upset, frustrated and saddened that this treatment hasn’t helped with my mother and her CC. Her liver is now showing a couple additional abnormal growths and the lesion on her skull has increased in size as well. The doctor has suggested starting a new combination of treatment called: Folfox Oxaliplatin 5 FU
We’re all saddened and hope that if anyone here has some feedback on these next steps or has had experience with this Folfox Oxaliplatin 5 FU treatment it would be greatly appreciated.
As always thanks for all your compassion and support. We’re keeping the faith that there is something that could help my mother.
Thank you
JoeHi joe, wishing you and your Mom the best of luck Monday. Just a little suggestion about depression should it happen. Call her Oncologist immediately and have him prescribe something mild to start with. 2 years ago before I had a colectomy I started getting depressed from so many years of being sick. My GI noticed and immediately put me on a small dose of Lexapro and for me it worked beautifully. I only had to be on it for a month but was glad I had done it. At any rate let the ONC know. Sometimes it also helps if your clergy could pay Mom a visit. It’s a rough road Joe, but hopefully some good news is around the corner.
UPDATE:
Hope you’re all enjoying your super bowl sunday.
Monday my mom will have blood drawn for an update on her counts as she wasn’t given chemo last week because of how low they were. We are still scheduled to have the CT scan of both her abdomen, chest and brain Friday with a report next Tuesday. Very nervous about the results since I know if the chemo isn’t doing anything my mom will go into major depression.
Not that I’m not thinking positively but in staying ahead of the news I ask if anyone else had experience where their blood didn’t handle the Gem/Cis well and a mix of the chemo cocktail was adjusted and worked? I only say this in preparation and again staying ahead of any adversity if in fact that will be the case.
Thanks and as always thanks for all your support!
JoeHi Catherine,
Yes, they are planning on scanning her brain as well to check on that pain which ultimately makes me the most nervous.
Thank you for your support!
Much love
JoeJoe,
Great news about the blood and hope the scan shows good news. Just wondering- will they also be checking the brain? With Dad (lung cancer patient the only way they could get a good read on his brain lesions was when they did an MRI with contrast. If you want to see how the brain is, you might have to ask for an additional test or clarify if they will be rechecking it.
Best wishes coming your way,
CatherineUPDATE:
My mom received her 1st round of her 3rd cycle of chemo Tuesday and her blood work yesterday (Friday) was actually very good. Although every time she does chemo the first round seems to go very well it is always right after the second round that the chemo and her blood goes to hell. Friday her blood work was 151 for platelets, 9.8 HGB and 6.8 WBC which are good numbers for her and what she has been through but obviously still not ideal.
The doctor has her planned for her second round of the 3rd cycle this coming Tuesday and then a CT scan the following week. Which all sounds like good news.
Unfortunately, this week my mom said she was suffering from what felt like a bump on her head…it just so happens to be the same spot they found the mets on her skull and now I’m fearful that during the scan we’re going to see a whole other mess of news that will inevitably put us in a world of hurt and dejectedness.
Thanks as always for all your love and compassion. My mother, family and I can’t thank you all enough for the support!
JoeJoe,
It is very hard, and I hope meeting with doctor gives you some answers. And everyone’s decision about cost/benefit of chemo is unique. We were fortunate that Mom’s chemo cycles then allowed us to move on to other treatments. You’re right that chemo not only took a toll on her body and energy, but it was an all-day event by the time we drove to the hospital, went through blood work and chemo and got home.
With Dad (lung cancer) he went through first chemo/radiation which gave us a remission for a bit, but when it returned it was an “easy” decision because we knew he is too weak to tolerate additional treatments.
My thoughts are with you and your mother- it’s frustrating to feel helpless but know now that you are doing a great job in helping her with this terrible disease.
Take care of yourself too,
CatherineJoe….you and your Mom are on the right path by continuously searching for answers. Good luck with the upcoming physician talk, which I assume will clarify many of the questions you have.
It’s great to know that the platelets are up and your Mom is ready for the next treatment.
Sending tons of good wishes your way and a big hug to your Mom as well.
Marion
UPDATE:
Thank you all for the warm wishes and advice. It means the world to me, my family and most of all my mother. She had another doctor’s visit Friday and her platelets were up to 95 so we are moving forward with another round of chemo on Tuesday.
This will be the 5th time she’s received chemo and will start her 3rd cycle. To answer questions about a less harsh amount this was done on the 2nd cycle after she was hospitalized during the 1st cycle. They cut the chemo in half or potentially even less than half to be safe.
Radiation hasn’t been suggested since she shows mets in her lymph nodes and a small lesion on her skull. Also why surgery wasn’t an option either. As of now the chemo is for palliative reasons although pain and time in the hospital getting transfusions/platelets is almost one and the same.
I plan on sitting down with her doctor on next Friday to discuss how this 3rd cycle goes and what he suggestions moving forward. Is it normal to keep this regiment:
– Chemo 1 week
– Chemo 1 week
– Platelets and Blood Work 3-4 days as out patient
Back to Chemo?I would assume the doctor wants to at least see if the chemo is working and get 3 cycles under her belt to do a CT scan.
All is very hard to stomach as we gain some hope with chemo but we lose time in the hospital and frustration of all that comes with it….I know that accepting that it might be best not to do chemo will be too hard for my mom or any of us to accept. Here’s to hoping that she can handle this cycle so we can get a good idea if in fact the chemo is doing its job.
Thanks to everyone’s love and support. This website and your words have been my saving grace during this whole experience and hope I can find the time to come out to Salt Lake City
Much love to all of you!
Joe
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