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Newbie caregiver with questions

11 years 1 month ago - 11 years 1 month ago #27622 by Lily
I finally found the drug combo on some papers that the visiting nurse had and allowed me to have a copy. There are two different ones - both used in treating small cell lung cancer, so I guess that's part of my answer. I actually have complete faith in the doctors because it IS a teaching school. There were certainly enough consulting on this one! I was three hours away at work when they did all the tests etc., so I wasn't there, but my husband said that about 8 doctors came in and went into a consultation room to decide what protocol they should use. I hate to say this, but I think they welcomed the opportunity to work on the rare cancer and see what they could do at this late stage and at his age. I guess it's just a matter of time and seeing how it goes. Thanks!

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11 years 1 month ago #27617 by Patricia
Wow.....thats a real helpful oncologist huh? Yeah they really hate it when we read too much don't they? And to not even tell you the drug combo they're using???????????? Doh.....I know that the VA there works with many of the doctors at Indiana U. Med Center who are tops in bladder cancer. I wish you could get a consult with Dr. Koch or one of the top radiologists there.
My son went to Indiana U. Med Center when he was diagnosed with testicular cancer and not only did they find the cure for it ..they absolutely believed in telling my son every dose of every drug he was getting and also told him to question everything that was brought into the room for him during treatment. Knowledge is a good thing.
This onco should be ashamed.

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11 years 1 month ago #27616 by Lily
I spoke on the phone with the oncologist yesterday a.m. and he was less than helpful. I DID learn that it was indeed Stage IV, but when I questioned him about the "grade" or whatever system he used, he basically said I read too much and that that's too technical to answer at this time. He also would not comment on what they were going for with the chemo - comfort or what, even when I asked. I'm sure he doesn't have all of the answers - he wants to wait until we have finished this round of chemo to see what the results are and what kind of response my husband has to the chemo but my brother passed away from small cell lung cancer 7 years ago and I know what the time frame for him was. I just feel like I'm in limbo....does everyone feel that way at first or is it just me???

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11 years 1 month ago #27499 by Cynthia
I am sorry to hear of your husbands and your troubles. This is a good forum and it will be able to help you no matter what your path as there are others here that share it.

You need to know what his exact diagnosis is. Until then a lot of what you are doing is guess work. It is hard to get specific answers if you don’t know what the specific questions are to ask. And his exact diagnosis will tell you what those questions are. I know the VA has its own way of working but is there any way you could have a doctor call you or that you could ask for a copy of his pathology reports? If not that is the first thing you need to know. The second is if there is spread where it is? I would ask what the goal of the chemotherapy was in real terms of survival and quality of life. There are times when chemotherapy is used to stabilize if not to cure, some times is is done to try and cure, at others it can only add maybe weeks of life with a high impact on quality of life. I would ask how they handle pain management and if you need a referral to their pain clinic if needed. If you husband is going to take a lot of physical care during treatment you might ask about home health care and how that is handled, or if they have a department such as a special social worker who helps with that sort of thing.

There will be more questions once you know what you are dealing with.

Hope this helps

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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11 years 1 month ago #27495 by Patricia
So sorry Jroo.....small cell carcinoma is a rare one...MD Anderson is doing some clinical trials on it. Here's a link...go about 3/4 of the way down the page
Also there is a discussion group of small cell carcinoma and you may find some helpful info there...its older but informational..look at lianes message

There's a company out in California called Rational Theraputics which i don't know why but its underused......but it sure makes sense to me
I don't know what chemo your husband is on now but since there is renal involvement already..chemo drugs can have a devastating effect on the kidneys.
I wish I could offer you more.

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11 years 1 month ago #27490 by Lily
My 74 year old husband was diagnosed with small cell bladder cancer on Aug 14 and started chemo on Aug 17. He had been hospitalized for 12 days when I brought him home. I am 20 years younger than he is and we do not share a residence, but it's always been understood that I would be there for him when he needed me. Diagnosis and treatment is/was at the Indianapolis VA hospital, which was not at all what I expected. It is a very big, very new and up to date place and he trusts their judgement. I was not with him to hear what the oncologist said exactly but the paperwork reads "small cell bladder cancer with acute renal failure". I've sort of determined that it's Stage IV on the net because we know it's in the lymph nodes and there are two small spots on his ribs. He currently is regaining strength from the stay in the hospital and feels ok - just tires easily. His next chemo is Sept 9 (our 20th wedding anniversary) and I actually am just looking for some input - his doctor made this sound extremely serious when he called me. He told me that "surgery of any kind is not an option", that he needed to start chemo immediately - that even two weeks might be too late and that there is no other round of chemo to try after this one. In my net research I find time frames of 3 months to 3 years. I know everybody's is different, but I feel that I really need to prepare myself so I can be strong, supportive, and ready for this, speak intelligently with his oncologist and ask questions too.

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