inda
12-29-2005, 08:35 AM
Hi
I am new to this board am a regular on depression and fibromyalgia and love it.
I was recently ( 1 week ago ) diagnosed with B cell Lymphoma. Going today to get first round of blood work and then next wendesday for a CT Scan. The only other thing I know is that it is Non-Hodgkins. Spoke with an Aunt last night and found out she was dxd a yr ago. She has refused any treatment, she is almost 81, and feels like she has lived a full life. I too felt like I didnt want any treatments, however I have a 25 yr old son who has made me promise him I will do whatever the Dr's ask me to do. I was wondering if there are any of you who have goen thru treatments and what is your prognosis? any reccomendations? any advice?
I am new to this board am a regular on depression and fibromyalgia and love it.
I was recently ( 1 week ago ) diagnosed with B cell Lymphoma. Going today to get first round of blood work and then next wendesday for a CT Scan. The only other thing I know is that it is Non-Hodgkins. Spoke with an Aunt last night and found out she was dxd a yr ago. She has refused any treatment, she is almost 81, and feels like she has lived a full life. I too felt like I didnt want any treatments, however I have a 25 yr old son who has made me promise him I will do whatever the Dr's ask me to do. I was wondering if there are any of you who have goen thru treatments and what is your prognosis? any reccomendations? any advice?
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cutigergirl
12-29-2005, 09:03 AM
Hi and welcome! :wave: What were your symptoms and story that led up to your diagnosis? I have a great friend who has an indolent form of NHL and currently on Rituxan. This is a great support forum!
carrie
carrie
Debbiefix
12-29-2005, 02:35 PM
I have an indolent form of Non Hodgkins lymphoma and have been undergoing Rituxan treatments....no side affects, no hairloss, no nausea. Lymph nodes are all "disappearing" and I love it! I actually enjoy my time of the infusions because that's my time to "do nothing" and just sit and relax!
I'm wondering how you were diagnosed, etc. I wish you the same luck that I've experienced since my diagnosis in June!
By the way, I never had symptoms, except the enlarged nodes. I feel better than ever!
I'm wondering how you were diagnosed, etc. I wish you the same luck that I've experienced since my diagnosis in June!
By the way, I never had symptoms, except the enlarged nodes. I feel better than ever!
kalbc311
12-29-2005, 05:52 PM
Please dont give up on treatment. This is one of the most treatable cancers there is. i have an apointment tomorrow because my doc suspects I have it as well. Im curious to everyone here as to what symptoms leadup to diagnosis?
Debbiefix
12-29-2005, 06:26 PM
my dx...I had a routine mammogram in May and the radiologist found enlarged lymph nodes under both arms. I had another node biopsied and sure enough...it was positive for a low grade form of NHL.
inda
12-29-2005, 07:13 PM
Wow... thanks for all the comments!!! {{{{{{all}}}}}}}
Ok here is the scenario for the dx of lymphoma.. last May.. I noticed a knot on the side of my face... I mentioned it to my rheumatologist in June and he said well you have had a sinus infection so it is probably a swollen lymph gland. In August I saw a new internist and again mentioned it.. he measured it and said to check back with him in approx 8 weeks... I hadnt gone back to him but was getting some extensive dental work done and asked the dentist if there was any chance I had a bad tooth and that the knot on my face was an abcess. He freaked out... sent me to an oral surgeon to have a FNA (fine needle aspiration) they did that on a friday morning.. the next thing I knew I was going to have a CT scan on the next Tuesday.. then BAM I had surgury to have it removed on the next wednesday. Now the FNA came back benign. so we werent really worried about anything at that point. I went in on the tuesday after surgury and had the stitches removed.. we thougth up to that point I had what was called a whartins tumor.. it grows in the salivia gland. On that tuesday they informed me that the tumor did NOT originate in the saliva gland and that they had to have it restained and recertified and they would call me when they got it back.. there was just something in the Dr's eyes that made me feel .. something wasnt quite right. I had been out shopping on wednesday the 21st of decemeber and gotten in about 530 or so .. one of the Dr's had called and said he needed to see me the next day or on firday.. I told my hubby that the path report must be bad.. he didnt understand why I said that.. I finally said .. look they just saw my face yesterday .. they dont need to see it tomorrow too and if it were ok they wouldnt need to see me at all.. Needless to say I was upset.. so I was finally able to get in contact with the Dr.. and he told me it was Bcell Lymphoma.. and that they needed me to come to the office the next morning. I went with my son in tow and was told that it was non Hodgkins and large cell.. I would need to see a hematlogy oncologist.. But first I needed a blood draw for a serum LDH and then another CT scan for my chest abdomen and pelivis( which I go for on the 4th) then I finally am seeing the oncologist on the 5th at 1pm. I have had no symptoms that I was aware of.. of course I have fibromyalgia and I think every thing is part of it.. But I have had no decrease in appetite or have I lost any weight. I do have a cough .. but I smoke and my great nephew on christmas eve shared his cold with me i think!!! lol So I am really still in the dark and only know what I have looked up on the web and what little the oral surgeons have said. I really appreciate any and all info/feedback..etc!!!
Ok here is the scenario for the dx of lymphoma.. last May.. I noticed a knot on the side of my face... I mentioned it to my rheumatologist in June and he said well you have had a sinus infection so it is probably a swollen lymph gland. In August I saw a new internist and again mentioned it.. he measured it and said to check back with him in approx 8 weeks... I hadnt gone back to him but was getting some extensive dental work done and asked the dentist if there was any chance I had a bad tooth and that the knot on my face was an abcess. He freaked out... sent me to an oral surgeon to have a FNA (fine needle aspiration) they did that on a friday morning.. the next thing I knew I was going to have a CT scan on the next Tuesday.. then BAM I had surgury to have it removed on the next wednesday. Now the FNA came back benign. so we werent really worried about anything at that point. I went in on the tuesday after surgury and had the stitches removed.. we thougth up to that point I had what was called a whartins tumor.. it grows in the salivia gland. On that tuesday they informed me that the tumor did NOT originate in the saliva gland and that they had to have it restained and recertified and they would call me when they got it back.. there was just something in the Dr's eyes that made me feel .. something wasnt quite right. I had been out shopping on wednesday the 21st of decemeber and gotten in about 530 or so .. one of the Dr's had called and said he needed to see me the next day or on firday.. I told my hubby that the path report must be bad.. he didnt understand why I said that.. I finally said .. look they just saw my face yesterday .. they dont need to see it tomorrow too and if it were ok they wouldnt need to see me at all.. Needless to say I was upset.. so I was finally able to get in contact with the Dr.. and he told me it was Bcell Lymphoma.. and that they needed me to come to the office the next morning. I went with my son in tow and was told that it was non Hodgkins and large cell.. I would need to see a hematlogy oncologist.. But first I needed a blood draw for a serum LDH and then another CT scan for my chest abdomen and pelivis( which I go for on the 4th) then I finally am seeing the oncologist on the 5th at 1pm. I have had no symptoms that I was aware of.. of course I have fibromyalgia and I think every thing is part of it.. But I have had no decrease in appetite or have I lost any weight. I do have a cough .. but I smoke and my great nephew on christmas eve shared his cold with me i think!!! lol So I am really still in the dark and only know what I have looked up on the web and what little the oral surgeons have said. I really appreciate any and all info/feedback..etc!!!
eat2na
12-31-2005, 12:31 AM
In 1995 I was also diagnosed with NonHodgkins Limphoma. Back then it was one of the most curable and now ten years later I am still here. I also saw a Hematologist/oncologyst. It is quite a shock to be told you have Cancer. I though that was something that happens to other people and that I was going to die. But now I don't even think about it. More than likely they will need to draw some Bone Morrow blood from you to test also. In my case they did it right at the doctors clinic where you will get your Chemo. The standard treatment for you will probably be CHOP the most common chemo regimen for treating Non-Hodgkin's lymphoma. I did six of these treatments and radiation.
forsuremarilyn
01-25-2006, 10:51 AM
I don't give advice, but I would suggest getting more information. For example, is your a high or low-grade? there are so many "kinds" of non-Hodgkins.
When I was diagnosed nine years ago with a high grade...B-ImmunoblasticNHL, I refused chemo.
three doctors had told me to ignore the tumor on the back of my head, outside the skull, under the scalp, but I had it excised and biopsied. Three labs (ncluding Scripps) confimed the diagnosis.
Because that tumor was encapsulated, but a small one right next to it was not, I submitted to radiation of about a square inch of my scalp...
I refused chemo and chose to do the Hoxsey treatment.
When I was diagnosed nine years ago with a high grade...B-ImmunoblasticNHL, I refused chemo.
three doctors had told me to ignore the tumor on the back of my head, outside the skull, under the scalp, but I had it excised and biopsied. Three labs (ncluding Scripps) confimed the diagnosis.
Because that tumor was encapsulated, but a small one right next to it was not, I submitted to radiation of about a square inch of my scalp...
I refused chemo and chose to do the Hoxsey treatment.
Kaycee41
02-04-2006, 08:50 AM
My father was diagnosed with indolent (slow growing) NHL about 5 years ago. His only symptom was a swelling on his jaw that looked like a bad tooth. A CAT scan showed a tumor in his abdominal area and he had some bone marrow involvement. He was almost 80 years old at diagnosis. The doctor decided to treat him with Rituxan alone. He had 6-8 treatments. This is a very easy drug to take compared to most chemo. He has been in remission now for 4 years and is doing great.