Saw my hematologist today, and we decided the best thing to do is wait another month.
We talked about possible treatments, and I was glad to hear she (my hematologist) was amenable to using Rituximab as a single agent therapy instead of going for all out chemo. I was also interested to learn she was surprised my platelets were as high as they were, considering the size of my spleen. She has seen several others patients, with smaller spleens than mine, exhibiting much lower platelet counts.
Removal of the spleen is another possibility, and could provide several years of relief, but there are a few downsides to that approach. Not only would I be off the bike for a few months, it will require the taking of antibiotics for many years, or even the rest of my life, until other organs take up the spleens functions, and the lymphoma has been known to spread to those other organs, including the liver, which would not be desirable outcome.
She even mentioned the possibility of radiation to the spleen, but I'm not too keen on that idea.
But after 7½ years of not needing treatment, and even entertaining the thought I may never need treatment, the decision to wait at least another month wasn't a difficult one to make. After all, except for an enlarged spleen, I feel [mostly] fine. Plus I'm still convinced the green tea is the cause of the rapid drop in platelets, rather than a change in my lymphoma or my greatest fear, bone marrow failure.
So in the mean time, I'm going to cut back my green tea intake [again] to about 3 cups of tea a day from 4 cups a day, and my hematologist ordered new cytogentic tests, AKA Flourescence in Situ Hybridization (FISH) to see if anything has changed in my chromosomal makeup, i.e. new translocations, deletions, additions etc.
Based on those results, and the results of next months blood test, we should have a better handle on what, if anything, is going on. Plus it will give me more time to do additional research, and consult with some of other lymphoma specialists, I have had contact with since my diagnosis, including a few at the lymphoma conference Edie and I will be attending in San Francisco next month.
We talked about possible treatments, and I was glad to hear she (my hematologist) was amenable to using Rituximab as a single agent therapy instead of going for all out chemo. I was also interested to learn she was surprised my platelets were as high as they were, considering the size of my spleen. She has seen several others patients, with smaller spleens than mine, exhibiting much lower platelet counts.
Removal of the spleen is another possibility, and could provide several years of relief, but there are a few downsides to that approach. Not only would I be off the bike for a few months, it will require the taking of antibiotics for many years, or even the rest of my life, until other organs take up the spleens functions, and the lymphoma has been known to spread to those other organs, including the liver, which would not be desirable outcome.
She even mentioned the possibility of radiation to the spleen, but I'm not too keen on that idea.
But after 7½ years of not needing treatment, and even entertaining the thought I may never need treatment, the decision to wait at least another month wasn't a difficult one to make. After all, except for an enlarged spleen, I feel [mostly] fine. Plus I'm still convinced the green tea is the cause of the rapid drop in platelets, rather than a change in my lymphoma or my greatest fear, bone marrow failure.
So in the mean time, I'm going to cut back my green tea intake [again] to about 3 cups of tea a day from 4 cups a day, and my hematologist ordered new cytogentic tests, AKA Flourescence in Situ Hybridization (FISH) to see if anything has changed in my chromosomal makeup, i.e. new translocations, deletions, additions etc.
Based on those results, and the results of next months blood test, we should have a better handle on what, if anything, is going on. Plus it will give me more time to do additional research, and consult with some of other lymphoma specialists, I have had contact with since my diagnosis, including a few at the lymphoma conference Edie and I will be attending in San Francisco next month.
Comments
I am going to the Lymphoma education conference in New York city next month. http://www.lymphoma.org/edforum. I really enjoyed the experience in San Francisco last year. I have been in remission since January but recently had a PET showing activity in my right lung. Today I get the results of the CAT scan. I don't look forward to having to research relapse treatment.
Patti
It's one thing to remove a spleen from an otherwise healthy person, the other organs will take up the slack after a year or two, but when you're immune compromised, the organs also take up the disease. At some point it may be worth it, but not just now.
A splenectomy is one of those things I am holding in reserve, like a transplant, when the time is right. But right now there are a lot of other options to pursue, before pulling out the big guns, so to speak.