fireeeyore
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Dear Chrissy,
My heart aches for you and your family. We are living parallel lives – my MIL was hospitalized 12/18 and diagnosed 12/20. She has been unable to have resection surgery, cannot have SIRspheres, is trying chemo but it is making her quite ill.
I pray for peace for you and your family after this terrible loss.
Jen
Shlamoney,
My MIL has a 10 cm tumor and did gem/cis – the cis made her very sick. She was weak, vomiting, unable to eat more than a few bites at a time. They changed to gem/ox and she has tolerated that a little better.
We investigated radiational seed implanatation – SIRspheres. I recommend at least seeing if you are a candidate for that. My MIL sadly was not.
I wish you and your family the best of luck on this journey. You have a large support system, use them, and steer them to this discussion board. We are a very small family and found wonderful solace here.
HUGS,
Jen
Sharonlee, I feel the same way!
Thank you everyone for your replies.Here’s the latest:
— one stent had started to fail so now they will be replaced every 6 weeks instead of two months
–bleeding occurred during stent change so rather than blood thinners they are putting in a “screen” according to my brother-in-law
–blood culture came back positive – testing for MRSA
–will take 6 weeks to clear blood infection so until then all treatment is put on hold
–the group at Robert Wood Johnson NB said to cancel the scans scheduled for 2/20 since SIRSpheres will be a long way off, if at all now
–I put a call into the primary onco to see if he will order CT of head to see if this is anywhere else based on her behavior – still waiting for that call backMy BIL said one of the “regular” doctors at Capital Health asked him about an advanced directive….he is unaware of one and does not feel my MIL can make that decision right now. He also said he hopes that this process goes quickly for her sake as she is emotionally and mentally checked out.
Yes, my husband & his brother took her to the ER. Her bili is up to 5.9 (was at 1.4 on Wednesday). They found “small” blood clots in her lungs. I’m awaiting further news. I just felt so helpless being unable to be there with them due to my illness.
OH, SharonLee, I am so sorry to hear this. My MIL only had one chemo treatment and hasn’t been right since either. The doctors have not talked hospice to us, nor have they done any guessing at prognosis, so I have no words of wisdom for you. I can only send you some of my strength to help you& your mom get through. {hugs}
Thank you all so very much for the kind welcome.
We have taken her to RWJ New Brunswick and saw a radiation oncologist have an appointment to discuss Sirispheres. The problem there is they want the bilirubin under 1 and hers is holding steady at 1.4. From what I’ve read and what the doctors have said, liver directed therapies are the most effective.
Marions- she had her treatment on a Friday, and we found all this out later, said her stomach started to hurt Sunday but did not take anti-nausea meds, vomited twice on Monday, and then vomited her meal on Tuesday night. Said she had a fever of 100.9 and called the Onco service. They put her on an antibiotic. Claims her fever went up to 102 but in the 20 minutes it took to get to ER was back down to 99. While in the hospital for 5 days it never went over 99.
Lainy – thank you. It’s what we want to discuss with her. Have a decent quality of life for what you have left, or be sick for the remainder of time you have.
Pamela – My heart aches for your daughter and your family. She is so young.
Gavin – she has 2 plastic stents as they could not insert the more permanent metal ones. She has to go back every 2 months to get them changed.
Again, thank you everyone. Just knowing there are people I can turn to who have experience helps.
