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Help understanding husb. Disease

sburns0266
Posts: 3
Joined: Feb 2004

Hi my name is Susie, three years ago my soon to be husband was diagonosed with Thrombocythemia. He went through the bone marrow tests, and the scare of possibly having cancer in 5 years, that's what the Dr. said anyways! He went on the Chemo Pills the strongest dose, boy was that awful for him, although it seemed that he was ok, as long as i made sure he ate many meals and good ones at that, but as time progressed he grew very tired ofcourse! at ended up on disability. His Dr. at the time, said that he was so different from other people with real cancer, because they were taking the awful doses of chemo and just going back to work after there treatments. That he shoulnt be so darn tired, well anyone who's talking strong drugs like that is bound to be tired, he'd actually fell asleep at the wheel of the patrol car once, and thankfully only hit gravel wich woke him up. God bless he was alright. As time has gone by he seemed to get older and older, body wise that is, and things just keep coming up wrong with him, but the blood platelets!!!!!!!!!!! is out biggest problem! there's to many, most of the time it's controled by this drug called agryln, wich is awful I think for his health and future health.But I keep researching, about Thrombocythemia, Thrombocythitosis, and the info. just keeps me going into circles. I can get lots of info on Low platelet counts but not To Many. and now it's out of control again, and not going down, the count isnt hudge like at first, but the oncoligist is very worried, and just keeps giving him more Agryln. If anyone can make sense of my letter, and need for more understanding, I'd be so greatful. Thanks so much, and God Bless all of you .

tiggertoo's picture
tiggertoo
Posts: 31
Joined: Mar 2003

Hi Susie - I wish I could give you an answer that would help you and make life easier for you and your husband. Dealing with cancer, and blood related cancers especially -- in my opinion is so hard! When you have to worry about your blood counts rising and falling and your immune system not functioning correctly you feel like you are on a non-stop rollercoaster - where are the brakes?!? I am a survivor of Acute Lymphoblastic Leukemia, almost 2 years...I can't wait! I don't have an easy answer for you, but what I would recommend to you is to do the following:
#1 - Go to theNational Family Caregivers Association to get support for your role! Without caregivers, cancer patients wouldn't survive! Three cheers for caregivers - Hip Hip Hooray! www.nfcacares.org

#2 - Call the Leukemia & Lymphoma Society
1 - 800-955-4572 They have a Cancer Information Resource Center and many easy to understand publications and may be able to direct you to other resources.

#3 - www.cancer.gov This Site is a Jackpot! On the home page, type in thrombocythemia and you will get a list of articles...you will click on each of the sections to get the info on each part. It is kind of strange the way it is put together. I think you can contact/email the webmaster to find out how to get the most info out of the site.

#4 - Go to OncoLink which also has some informative and much easier to understand articles on this subject too. www.oncolink.org
Also at this site, if you click on the link for types of cancer, select Leukemia, then Mylloproliferative and it will explain some more to you.

#5 - From the reading I have now done, I believe that your husband to be has a myeloma type cancer possibly? I would recommend that you also contact the International Myeloma Foundation 1-800-425-2873 0r www.myeloma.org

#6 - Also contact The Multiple Myeloma Research Foundation at 1-203-927-1250 or www.multiplemyeloma.org

I hope this helps! Best of luck and blessings to the both of you. Feel free to email me on this site to let me know how the both of you are doing and if you need any more help! :) Tiggertoo aka Kathy

sburns0266
Posts: 3
Joined: Feb 2004

Hi Kathy, May God bless you for just replying to my messg. i didnt think people acutally read and replyed to these things. But your an angle to me for doing so. My Husband went to the Dr. for the 3rd time, blood ct. still not good, he's been put on chemo pills a month ago this is his second go around with them!! and they AGAIN have increased his Agrylin to 8 aday, this med, is god awful for his body as it is. I mean SUPER awful . but the Dr. still has no comment as to what's causing the platles to stay hi, and his risk of stroke/heart attach are somthing awful, plus taking the chemo to long again, can cause Leukemia. Whew this is so scary... I will be researching all of the WONDERFUL info that you sent me, again your an angle:):):) take care, i hope that we can talk again soon. If you care to email me via aol i'd luv it, sburns0266@aol.com i hope that it's ok to do that on this mess. board.. best wishes.. Susie

Sanny
Posts: 1
Joined: May 2004

Dear Susie,
I'm sorry to hear how husband struggles, but believe me when I say that I know how he feels.
I was diagnosed with Myeloproliferative Syndrome incl. Thrombocytosis about 12 years ago. Back then they didn't know a whole lot about it, but I searched for the best care possible.
For the first 11 years I was given a drug called "Hydrea", which has now been proven to possibly cause Myeloid Leukemia. I have to say that it was possible to live a pretty normal life, but obviously I wasn't going to continue with that drug. In the past 8 years I had two episodes of bloodclots in the splenic vene. Both times my platelet count was above 1 million. I was in hospitalized for a week and treated with blood thinners until the clot had desolved.
I'm a female in my 30's and I had the wish to become pregnant. Instead of taking oral medication during this time, I was forced to inject once a day "Interferon" into my thigh. At first I was miserable, but after a few days my overall health improved and I was able to deliver a healthy baby 6 months ago.
After the delivery my blood platelets went skyhigh and I was put on 2 mg (4 pills) of Agryln. It's not great, but I'm managing to survive as a new mother with a fulltime job.
My only suggestion is to find a good hematologist in your area. I actually went to New York Presbyterian - Weill Cornell Campus and had a consultation with Dr. Richard T. Silver. He is the "pope" of hematology/oncology and although he doesn't take insurance, it was worth every penny. He explained my illness and it's effect and made me understand it a lot better.
All I can say is that researching this illness on the Internet only made us feel more confused and afraid, but being in the hands of a good doctor helped us to cope.
Good luck and all the best
Alex

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