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Need Lymphoma support board - ABCS quality

8 years 4 months ago #33415 by LeeH
I never underestimate the power of dumb luck! :)

Lee

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8 years 4 months ago #33414 by sara.anne
Sounds as if you are getting the right medical advice and treatment, Lee. You are indeed fortunate to be located where it is available.

Will be keeping good thoughts!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 4 months ago #33409 by LeeH
Thank you all for the help and the support/information sites which were really useful.

The final diagnosis after bone marrow and PET scans was Bcell Non Hdgkins Lymphoma, indolent and marginal. Very early stages. There is some expected lymph node involvment seen on the PET scan but not the CT scan and some bone marrow involvement.

Treatment will be 4 weekly infusions of Rituxan only (no reason for rchop at this point), a 6-8 week delay and then rescan for results. They would expect a full response.

Lee

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8 years 4 months ago #33227 by sara.anne
Lee, I am afraid that with the high incidence of all kinds of cancers, there are many such "pairs." First my husband was diagnosed with prostate cancer, a year later I with breast cancer, two years later he with lung cancer. He passed away 11 years ago.

Now I have a boyfriend with CLL. His leukemia has been in
the "watch and wait" stage for about 10 years. I heard about a study at NIH on the natural history of CLL where they were recruiting patients such as he who have had no treatment yet, so we will be going to Bethesda in September. His numbers have been slowly rising, he has lost some weight recently and had night sweats and anemia, so it will be very interesting and, hopefully, useful to see what the specialists at NIH might recommend.

We have received a wealth of information, including local support groups (not his "thing" :) ) from the local chapter of the Leukemia and Lymphoma Society and lists of doctors who specialize in CLL locally. Also, as I mentions before, aid with travel funds for treatment...the first visit to NIH is not paid for by them.

Good luck to you on your new role as a care-giver.

Sara Anne

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 4 months ago #33223 by LeeH
We'll have a better idea of where we are headed after the bone marrow biopsy, but it is nice to know that treatment can be swift and effective.

Frankly, if I had to choose, I would rather be on the patient side of the equation, much easier in my opinion.

I was thinking, I wonder how many 'cancer pairs' like us are out there?

Thanks again Rocky. It is always comforting to know there is someone out there with a similar experience.

Lee

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8 years 4 months ago #33216 by Rockyiss
Hi Lee. I am so sorry to hear about your wife. My husband was diagnosed with diffuse large b cell non hodgkins lymphoma two years ago , If you have anything you want to ask maybe I can help.
He had night sweats for about a year and we were told that it just came with age. WRONG ! It is a symtom of the lymphoma.
They found his when he developed a blood clot in his lung and leg. This was from the tumor in his groin. He had six chemo treatments of r-chop. He had nausea that was controlled by meds , tiredness, and his bones ached from the shots they gave him to keep his blood counts up. The chemo worked fast and he went into remission, and is still clear after two years. In fact he got his port out today.
It was tuff but several months after he finished chemo our house caught on fire sooo we just had to dig in and deal with life. It was a blessing indisguise because he is a builder so we got to work . Working on our house brought back his strength and got us thinking about other stuff besides us both fighting the little c.
When I just told him about you guys he said to tell you this, there is always hope and you will make it through this.
God bless and if you have queations ask. Rocky

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