jmoneypenny
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Hello Susan,
I see that you haven’t posted for a while, but I”m new to this forum and I’ve been looking over the postings and I see your mother’s situation is similar to mine. I understand if you don’t want to talk about it, but how is your mother – has she passed? I’m in the “waiting and watching” phase with my mother, wondering how long she has, looking for specific symptoms, worrying and worrying. She was just diagnosed two months ago, but she is in Stage 4, with her entire liver covered in tumors and some on her lungs. I’m just looking for any information about end-of-life care and what I should look for.I’m so sorry if your mother has passed – and if she hasn’t, I’m sure we would love to hear the happy news.
All the best-
JoyceHi Sara,
Yes, we are planning on switching doctors, but my mother really doesn’t mind Dr. Hochster too much – it’s ME. I’m just taking out some of my anger at this illness and focusing it on him, because he seems to have no sympathy and keeps my mother waiting for so long and she’s so weak it infuriates me. He is supposed to be a great specialist, and he IS very knowledgeable where others were clueless, but we’re going to switch soon – one more opinion, and then hospice if there are no new and non-debilitating treatments available. I didn’t mean to come off in such a hostile tone – but I find myself very angry at the medical establishment in general and even at just regular healthy people because I’m so upset about my mother’s condition – a normal part of grieving, I’ve read, but I’m doing it early.You’re absolutely right about working with an oncologist that you feel comfortable with – and we’re indeed lucky to have so many great cancer care centers in this area.
That’s great that your mom has had some success with Gemzar, and she’s 81! She must be a very strong woman to be able to withstand chemo at her age. Congrats and best wishes for the future!
Esposij – I’m also in New York and my mother is getting treated at NYU – can you tell me what the new treatment is that you heard about, at Lenox Hill? Also, I would love to share my impressions of NYU with you and see if you have the same complaints (and some positive things!) Our doctor is Howard Hochster and he’s supposed to be the cutting-edge guy with this cancer, but I personally hate him and want him dead because he has such a cold and uncaring manner. I’d be interested in learning about any better doctors or treatments in this area, if they’re working for you. You can email me directly at dotbaumann@yahoo.com – my name is Joyce – or you can post here, if you’d prefer.
Thanks and best of luck to you!!!UK member – I don’t know if I’m replying to you or to the board in general, but I wanted you to know I read some of your posts and your ‘in remembrance’ and I was very touched. Your husband was so lucky to have your love and the love of his family and to know that until the very end. I see that you say you might have wanted, in hindsight, to try Gemcitabine, as it seems to be tolerated well – so it may make you feel a bit better to know that my mother didn’t tolerate it well at all, though it did seem to alleviate some symptoms for a while. I don’t know if the side effects of the chemo are worth it for her, though. She only had one round of chemo and they can’t give her another one yet because her bilirubin levels shot up and now we have to go for an ultrasound to see if there’s blockage or something else going on. Dragging her to doctor after doctor is just too fatiguing and depressing, and I see why someone would decide to forego all the treatments and have as good a death as they can.
My question is: were your husbands’ symptoms very bad the few months before he passed? I don’t want to be my mother’s executioner by urging her to continue with chemo, but her symptoms without chemo are pretty bad, and I don’t know of any other way to alleviate her discomfort. Is there anything you can recommend for nausea, bloating, fevers, fatigue? We’re trying to get her to eat a healthy diet to boost her immune system since she’s anemic, but what else is there to do?
Thank you for sharing your story and letting all of us know that we’re not alone in this.
– JoyceThank you both for your thoughtful replies – my mother hasn’t had any draining and they DID say her liver was just swollen, but I wonder how much more it can swell at this point. They (the docs) didn’t mention ascites so I’ll assume she doesn’t have them – yet. Her PET/CAT scan was pretty recent, so hopefully they would know. But they haven’t even told me if she has intrahepatic or extrahepatic yet – her doctor, who is a real bigwig and expert, is on vacation for two weeks – isn’t that nice? so we can’t get very specific answers until his return. All my research seems to indicate that jaundice isn’t that common in intrahepatic tumors, so that would help answer some of my questions.
Yes, Moneypenny is my real name ! – and it’s of British/Scottish origin – though I’ve been to Great Britain many times and they get as many laughs out of my name as Americans do. I’ve heard all the James Bond jokes, but feel free to come up with some of your own – I don’t mind! I never understand people who are sensitive about their names – I’m so proud of mine and I gladly put up with the same James Bond references over and over, through the years!
Thanks for the support in these forums – though I hate to say it, we’re actually hoping the end is near, as my mother has so many complicating autoimmune problems and has had constant hives and itching for years and I’m just afraid to see her go through more of that – her body overreacts to all medicines and treatments and she’s not taking the chemo well and her quality of life is already pretty bad – a few hours a day feeling decent, that’s all. But without chemo she was in very bad shape, too – though she’s still living on her own and able to function. I know everyone hopes for a cure and continues fighting bravely, and I applaud all of you, and many of you will win the fight– but I just know my mother isn’t going to fight this, not now, not after going through autoimmune hepatitis, then breast cancer, then losing my stepfather to cancer. Her case seems to be unique, even for this rare disease. So I’m just looking at ways to improve her QUALITY of life so she can smile at my daughter and laugh with us for a while again. I don’t want to be a downer to all the fighters out there and survivors who have beat this terrible thing – or at least kept it at bay. I hope for the best for all of you.
I’m so sorry to hear that – my deepest sympathy. Thank you for the info about Naxin, which might be helpful with my mother – anything to improve her quality of life.
My mother also has fever between chemos, but she had fever before treatment too – always started in the evening or at night; there is no infection, they say it’s called a “tumor fever” – happens from the cancer, not from the chemo. She takes Tylenol to lower the fever but otherwise she just has to live with it. After ruling out infection, I would think tumor fever might be the case for you, too. My mother’s liver is completely taken over by tumors, so the involvement of the liver may be the key.
