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Can someone please help me?

Posts: 20
Joined: Dec 2008

Can somebody please help me. I have Hodgkin Lymphoma nodular sclerosing. I've had it for 2 years now and 4 different types of chemo treatments. ABVD, ICE, GVD and now mini BEAM. they are still trying to get rid of it enough to get a stem cell trans. My terrible insurance company Health Assurance (I feel bad for anybody who has this) has made me switch oncologists. Now, so much time has gone by, this cancer will not go away. My new oncologist wants to give me and Allogenic SCT (my other onc always talked about the AUTO). So now I need an ALLO which has so much more of a risk. I'm sitting here at West Penn Hospital in Pittsburgh getting MINI-BEAM. The nurses here are very incompetant. I'm very scared for my life to get a SCT here!!!!!! Has anyone been to Cleveland Clinic for a SCT and if so, how did it go? The nurses, your treatment, the rooms? Are there nurses walking around coughing and sneezing?

PLEASE HELP!!!!!!!!!!!!!!!

winthefight's picture
Posts: 163
Joined: Dec 2007

Although I have not been treated at this facility, I just want to give you this piece of advice......Trust your instincts... If you don't trust these ppl because you feel they are incompetent, by all means go somewhere you feel comfortable. You must feel completely confident with your medical team...which includes your scanning facility.

I hope this helps. Continue to be blessed and walk in your healing.

Gaz's picture
Posts: 22
Joined: Oct 2008

I'm a 53 year old Vietnam era vet and nothing scared me more than when I was told I had stage 4 NHL. "winthefight" is right...trust your instintcs. Above all...fight...stand...believe.

hodgkoid2003's picture
Posts: 96
Joined: Apr 2009

I don't know if you have resolved this...

Two things, perhaps you can get your employer involved. I would also get your original oncologist, and perhaps social worker (at hospital your doctor is based out of) to act as an advocate. Perhaps, even contacting your congressman's office.

I am big believer in "mental" being part of the treatment plan. And you need to believe in it. I have no personal experience with the Cleveland Clinic, but it is one of the "larger" facilities for treating Hodgkins.

I hope you get the treatment you need.

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