Diffused Large B Cell Lymphoma stage 3e Newbie....need some insight...thank you.

Andy187

Hello every one! My name is Andy and i recently been diagnosed with Diffused Large B Cell Lymphoma stage 3e. First, let me give you a little history. On January 31, 2012 i had total knee replacement. Up to this date, my knee is not quite rite. Anyway, in March i was having some stomach problems since i had divericulitis before, i went to my regular doctor and he ordered an ultra sound of my liver and abdomen cause my liver enzymes were very elevated. Maybe cause of all the meds from the knee surgery.

I went and took the ultra sound and the results was, that i had blocked vile ducts in addition to a small 2.1cm cyst in my spleen. So, 2 months later im feeling bloated, diarreah, losing weight and pain on my side. My Doctor ordered an mri . Withing 2 months m cyst has grown more than tripple. I was sent to an oncologist. Did a PET SCAN and my spleen lit up like a christmas tree. My jugular and pelvic lymph nodes lit at well but not as much. They tried to biopsy my pelvic lymph node and it came back inconclusive. The spleen is so vascular to biopsy, so they had the reamove the WHOLE THING and was sent to pathology. 3 days later, in the hospital i found out about the cancer.

Did bone marrow biopsy and thank god it came back negative. Im right now on my second post day of my first R-CHOP therapy. I need 6 cycles. So far so good. Predinisone has m going crazy a bit. Didnt sleep last night at all. Hope tonight is a better night. I just want to know what to expect ahead. I hace been eating well though. I also got my booster shot for my wbc. They told me to take claritin for the pain in chest and back.

My dilemma doesnt end there. About 22 years ago i was diagnosed with HIV +. I had a bad blood transfussion after a car accident. I never needed any medication EVER. Until now. When i was in the hospital taking my spleen out, my CD4 count went so low and viral load high. So, they started me on medication to help my immune system which now all out of wack. My lymphoma is no way connected to my hiv problem. What could have triggered it? Will this make my treatment harder? What can i expect in my next few days. Again, im in my 2 post treatment day of my 1 treatment EVER. thank you all and God Bless. I need to attack this like HIV , positive approach and great support system that i never needed treatment after 22 years, until now. Any help and support will be greatly appreciated. Thank You

anliperez915

Hi Andy
Hi Andy,
Welcome to the group, sorry that you have to be here...My dx is different then yours mine is Splenic Marginal Zone NHL, stage 4 with tumors in spleen, liver, and bone marrow involvement. I'm also + , have been for 22yrs also, I have always been undetectable until last year when I got lymphoma. Now I'm doing good in that area (undectectable again)...I still haven't reached remission but keeping my fingers crossed! I'm currently doing Rituxan treatment once a week for four weeks every six months, this is my second round. I have three kids (18) (14) & (4) yrs old (all negative) and I thank God, the medicines, and Docs for that!!! I hope you do good in your treatment and if you have any questions but don't want to put them on the public board you can always send me a private message ok. Take care

Sincerely,
Liz

Max Former Hodgkins Stage 3

Piling on...

Andy,

Welcome. You have a lot on your plate, and seem well-informed. I would question one thing you wrote: Lymphoma is unrelated to the HIV issue. I suspect not, since both are immune system issues at their core. I, too, was in a crash before HIV blood testing took effect. I received 22 pints in a week. I was later very concerned, of course, and was tested within the next year -- negative. It was a long wait for that doctor consultation !

Fast forward to three years ago. When my ct for lymphoma came in, the first three docs to see it and comment on it were all non-oncologists: The radiologist, my family doc, and a general surgeon. The surgeon looked at the ct on his laptop, and said "This is lymphoma; either that, or AIDS, because they look just alike." Although a general surgeon, I learned both from him and my Oncology group that he does a huge amount of cancer surgery.

From this history, I would not dismiss a linkage, although I suppose that there is nothng that can be done about it, one way or another. But, lymphoma is very treatable, and from what I read, AIDS is as well. I hope you have a good prognosis. I lot of folks here have done r-chop, and will give you insight there (I did a differnt combination therapy for HL).

I know what worrying about HIV is like, and everyone here knows what worrying about lymphoma is like.

I am sure that by tonight you will have many new friends here, with a lot of good information.

max

.

coachmike

Max Former Hodgkins Stage 3 said:

Piling on...

Andy,

Welcome. You have a lot on your plate, and seem well-informed. I would question one thing you wrote: Lymphoma is unrelated to the HIV issue. I suspect not, since both are immune system issues at their core. I, too, was in a crash before HIV blood testing took effect. I received 22 pints in a week. I was later very concerned, of course, and was tested within the next year -- negative. It was a long wait for that doctor consultation !

Fast forward to three years ago. When my ct for lymphoma came in, the first three docs to see it and comment on it were all non-oncologists: The radiologist, my family doc, and a general surgeon. The surgeon looked at the ct on his laptop, and said "This is lymphoma; either that, or AIDS, because they look just alike." Although a general surgeon, I learned both from him and my Oncology group that he does a huge amount of cancer surgery.

From this history, I would not dismiss a linkage, although I suppose that there is nothng that can be done about it, one way or another. But, lymphoma is very treatable, and from what I read, AIDS is as well. I hope you have a good prognosis. I lot of folks here have done r-chop, and will give you insight there (I did a differnt combination therapy for HL).

I know what worrying about HIV is like, and everyone here knows what worrying about lymphoma is like.

I am sure that by tonight you will have many new friends here, with a lot of good information.

max

.

I can understand
I am also + and have Diffuse Large B Cell Lymphoma

Just so you know I was diagnosed with HIV in march last year and three months later I found out that I had cancer, what a horrible three months lol. However I want you to know that they are both very very treatable at the same time.

My HIV viral load was over 600,000 and my CD4 count was 12!!!!! I have gone through 11 rounds of chemo and an auto stem cell transplant and my viral load is now undectable and my cd4 count is over 200! All this while taking extensive chemo and a transplant. During chemo your cd4 count will drop but the important thing is that you take the viral meds to control the viral load. Ive been undectable for bout six months and plan on keeping it that way. My lymphoma was reduced to 98.5 from the 11 rounds of chemo. Now I am recovering from the transplant which I am very hopeful got the last little bit of cancer to rid of my body.

I have never disclosed my HIV status to anyone other than my partner until now, I felt compelled to do so after reading your post. I am living proof that both diseases can effectively be treated.

Andy187

Max Former Hodgkins Stage 3 said:

Piling on...

Andy,

Welcome. You have a lot on your plate, and seem well-informed. I would question one thing you wrote: Lymphoma is unrelated to the HIV issue. I suspect not, since both are immune system issues at their core. I, too, was in a crash before HIV blood testing took effect. I received 22 pints in a week. I was later very concerned, of course, and was tested within the next year -- negative. It was a long wait for that doctor consultation !

Fast forward to three years ago. When my ct for lymphoma came in, the first three docs to see it and comment on it were all non-oncologists: The radiologist, my family doc, and a general surgeon. The surgeon looked at the ct on his laptop, and said "This is lymphoma; either that, or AIDS, because they look just alike." Although a general surgeon, I learned both from him and my Oncology group that he does a huge amount of cancer surgery.

From this history, I would not dismiss a linkage, although I suppose that there is nothng that can be done about it, one way or another. But, lymphoma is very treatable, and from what I read, AIDS is as well. I hope you have a good prognosis. I lot of folks here have done r-chop, and will give you insight there (I did a differnt combination therapy for HL).

I know what worrying about HIV is like, and everyone here knows what worrying about lymphoma is like.

I am sure that by tonight you will have many new friends here, with a lot of good information.

max

.

Thank you
Max thank you so much for your comments and comfort. Im in my 3rd post day post of my first R-CHOP treatment plus im taking Atripla for the hiv. They started me as soon as they removed my entire spleen. I need 6 cycles of R-CHOP treatment according to my oncologist. I guess the rest of my lymphoma is in my lymph nodes at my jugular and pelvic area. My doctor told me thatbits nit hiv related. Hiv related lymphoma is more agressive. Thanks Max so much. Keep in touch.

Andy187

Andy187 said:

Thank you
Max thank you so much for your comments and comfort. Im in my 3rd post day post of my first R-CHOP treatment plus im taking Atripla for the hiv. They started me as soon as they removed my entire spleen. I need 6 cycles of R-CHOP treatment according to my oncologist. I guess the rest of my lymphoma is in my lymph nodes at my jugular and pelvic area. My doctor told me thatbits nit hiv related. Hiv related lymphoma is more agressive. Thanks Max so much. Keep in touch.

Thank you ALL....
Omg, i thought i was the only one going with all these things at once. Thank you all for all the positive messages and comfort. I just adopted my little girl of 6 years old about a week ago which i had her since she was 2 as a foster child. I have a 23 year old and an 18 year old. I want to see my kids grow and have a family of their own. When this whole ordeal fell on my plate it was like it eas over. Thanks to you guys i know their is hope. My viral load was never over 150,000 in 22 years and my CD4 count was over 750. Ever since that tumor grew in my spleen my viral load went up to almost 600,000 and CD4 down to 253 in a period of 2 months.

Im eating well, no naseau nor vomiting. No body aches even after my booster shot. I know its on been 3 days from my first treatment, but so far so good. Does it get worst as i get more treatments? Im trying to learn as much as i can to strenghten my immune system and raise m white blood count. Again, you are all a blessing and thank you for disclosing very personal information with me. I can really relate to you all.ill keep you all posted on my progress.

Feel free to send me a personal message if you like. God Bless you ALL...

Andy187

coachmike said:

I can understand
I am also + and have Diffuse Large B Cell Lymphoma

Just so you know I was diagnosed with HIV in march last year and three months later I found out that I had cancer, what a horrible three months lol. However I want you to know that they are both very very treatable at the same time.

My HIV viral load was over 600,000 and my CD4 count was 12!!!!! I have gone through 11 rounds of chemo and an auto stem cell transplant and my viral load is now undectable and my cd4 count is over 200! All this while taking extensive chemo and a transplant. During chemo your cd4 count will drop but the important thing is that you take the viral meds to control the viral load. Ive been undectable for bout six months and plan on keeping it that way. My lymphoma was reduced to 98.5 from the 11 rounds of chemo. Now I am recovering from the transplant which I am very hopeful got the last little bit of cancer to rid of my body.

I have never disclosed my HIV status to anyone other than my partner until now, I felt compelled to do so after reading your post. I am living proof that both diseases can effectively be treated.

We have a lot in common
Thank you so much Mike for your honesty. It is not an easy subject to talk about and i really appreciate your comments and support. Right now im taking Atripla . I only need 6 R-CHOP treatments according to my oncologist. You have iven my hope and motivation. Ill keep you posted and ill pray for your recovery. Keep in touch. God Bless!

anliperez915

Andy187 said:

Thank you
Max thank you so much for your comments and comfort. Im in my 3rd post day post of my first R-CHOP treatment plus im taking Atripla for the hiv. They started me as soon as they removed my entire spleen. I need 6 cycles of R-CHOP treatment according to my oncologist. I guess the rest of my lymphoma is in my lymph nodes at my jugular and pelvic area. My doctor told me thatbits nit hiv related. Hiv related lymphoma is more agressive. Thanks Max so much. Keep in touch.

Hi Andy
Hi Andy,
Hope you are feeling well today? I read your post and was just confused about what your doc said to you about HIV related being more aggressive? My first Oncologist said to me that my lymphoma was HIV related but my subtype is not aggressive. I think my subtype is probably one of the easiest to treat from what I've read, not sure why I haven't been able to get rid of it though. (Splenic Marginal Zone NHL) Any comments are welcomed, thanks
Take care, sending positive thoughts your way!

Sincerely,
Liz