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Feeling very helpless and need to vent

billswife
Posts: 33
Joined: Feb 2004

I'm new at this so please bear with me. In Nov. 2003 my husband was diagnosed with a rare form of nasal/sinus cancer( the Dr.s didn't even give it a long fancy name:) He was treated with radiation & chemo and in June 2004, the tumor was gone.

This past March , a routine pet scan detected a tumor about 1/2 inch in diameter in his lung. Our oncologist and everyone else who looks at the results keep saying it's so small and don't seem particularly alarmed. My husband won't ask what kind of tumor is is-- he doesn't want to know and of course the privacy laws won't let anyone tell me. He's has started chemo again ( carboplatim & Gemzar)

The problem is that, he had his 1st treatment on April 1 and has not been able to have any since. His blood cell counts have been too low, so now they want to do a transfusion on Monday and try again on Friday.

Is this unusual? To me, anything involving blood and the lungs is really scary.

I 'm a type A kind of person and this just sitting around doing nothing is driving me crazy.

Thanks for letting me vent.

truejoy8's picture
truejoy8
Posts: 41
Joined: Jan 2004

Hi billswife,
I'm so sorry for all you're going through. I just recently have completed 2 years of cancer treatments myself. And yes it is normal for them to stop when the blood counts get too low. They delayed my treatments a couple of times for that. Depending on what is low- the white cells, red, cells, or platelets they may do a whole bunch of transfusions or a series of injections. The shots can be expensive though.
If he really doesn't want to know what kind of tumor it is that's his decission. If you really want to know all you can do it tell him how much it's worrying you and explain how knowing more makes YOU feel better. Personally I wanted to know everything about my type of cancer and did a lot of research....it's the fear of the unknown that can drive me crazy. Even when they told me I only had like a 40percent chance of sucess...at least I could cry a little and then start to cope. BUT that is not true for everyone. If the doctors are acting like this is no big deal then maybe it is. In that case he probably just wants this to be over as soon as possible and doesn't want it to take over his life. I can understand if he doesn't want to be thought of as a cancer patient...I didnt either.
Anyways..those are my thoughts. Feel free to email me if you ever need to talk or feel alone. Good luck!

Shanti

maureengirl's picture
maureengirl
Posts: 24
Joined: Mar 2002

hey i understand how u feelm, i cant spell mthe name but i have acc , and thereare times where i feel helpless. so i know what and how u feel . i have acc of thenleft sinus and head so u see i understand mre then u know

lolpz
Posts: 12
Joined: Jun 2005

hello Billswife
yes it is normal for treatments to be stopped if its blood counts are low..primarily the red blood count....if the white counts are low they could provide him with Neupogen which increases the white blood counts...my mother(has stage IV colon cancer) uses this drug along with an injection which increase her red blood count.... she's had two blood transfusion since her cancer was discovered...i'm sure its very difficult to not know what kind of cancer your husband has...I will pray for you and your husband so he could have the strenght and courage to fight this horrible desease...

may GOD be with you and your family

Luis

kevin---
Posts: 1
Joined: Jul 2005

I had a similar situation where they wanted to send me home from the hospital without my treatments. I argued with the hospital staff refusing to go. Eventually they got in touch with my doctor who prescribed a blood count booster. I was on that for a week but the following week I was strong enough again to receive the chemo. Sometimes you have to make a little noise at the clinic so you are not just a statistic. try and get them to see that you are human on a personal level. again my doctor stated that at the hospital if my blod counts were low (a predetermined # by him ) that i should be sent home. I was sent home two weeks in a row and decided that I had enough of that. they have the resources to boost the blood so let them know that you know its available. Hope this can help.

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