devastated
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Lainy: We are seeing a pallative care pain md at Mass General. He is on methadone 3x a day (which has been increased appropriately) and break through dilaudid. It can sometimes bring the pain to a 2 or 3, but never goes away. He is also on zofran 3x a day.
I too believe that with today’s medication that no one should be in pain. Since his diagnoses he has had pain. The pain is in the center of his abdomen, which once again is where it has always been.
Having this be his “off week” of chemo we were really hoping that he would be feeling better.Can someone explain this chemo treatment to me? FUDR pump? my husband just finished 4 cycles of folfox and ct scan scheduled. Folfox was VERY DIFFICULT for him. Not sure if oxi/gemi or something with xeloda will be next. Lymph nodes are her2 pos.
Thanks!Thanks to all you for such insightful information. It is so nice to hear from others that share the unfortunate diagnoses of cc.
My husband has stage 4 cc. He has a plastic stent that has worked wonderfully, his tbilli is .4, his alt and ast are normal. The fulfox & oxiplatin have taking a toll. He is not ready to give up but just wants to live. We will be having a full ct scan next tues and md visit on wed. Another wrench in the mix is his incredible night sweats (changes shirts 3x a night, and goes through 4 towels) The doctors are stumped. His testerone level is just about not existed. They are now looking at his adrenal glands. We will be having a cortosol drawn and f/u with endocronlogist on Thurs. Not sure what this will reveal, hopefully some explanation,
Jamie: my husband has had 4 compete rounds with the 2nd and 4th decreassed due to side effects. He has been on round the clock zofran and/or compazine. This last round they added emend and decadron. Not much help, though no vomiting. We had a ct scan done for a possbile ileus, but that showed the lymph nodes are shrinking. We have a full ct scan for next tuesday. We will have to really think and talk about our options. Also, his lymph nodes are Her2 postive which can add a different chemo that may respond with minimal side effects. We are not at hospice yet, the docs believe that there are other options we can try.
Thanks PCL who are an abbundance of information
thanks for spelling out the options. I love the quote too.
Thanks for all the support!KathyB,
Wow, your case sounds similar to my husband’s. Maybe it was a bactrim reaction??? More confused. May I ask what are you doing for treatments? It sounds like you got a couple of opinions. We have one scheduled for next week at Dana Faber in Boston. My husband is still in the hospital. Most of his labs are coming down, but bili is a little slower. Everyone is by mouth now, no iv’s and pain is pretty well controlled.
We just need him home
JoannThanks to all of you for your support. I think I now have the train back on the track. I have decided that I have handpicked my passengers and the driver. I also have put some at the back of the bus in case I need to bump them off
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We are being treated at Mass General. When all is said and done, I think I have my team and a treatment plan too. My husband’s bili went down today (thank God) and hopefully continues to do so. Had consult with pallative care and pain is much better controlled and he seems better. The plan at this point is to continue to have bili decline and then put in stent and then start the fight with chemo. I am just hoping to get him at baseline which was 3 weeks ago.
I do have a 2nd appt set up with Dana Faber. Not sure I will leave Mass after that. I am feeling more confident now with our team. With 3 kids going to college in the fall (fairly local) I need to keep my husband close by.
Thanks for the thoughts, support, and prayers.
Its a new day, and I have come to realize it is truly “One day at a time”.
