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Follicular Lymphoma Rituxin for symptoms

lees1953
Posts: 20
Joined: Sep 2009

Looking for answers, diagnosed in April 09 Stage 4 due to bone marrow involvement. Watch and wait; now two scans later each scan shows minimal growth. However, symptoms are much worse. Had none to begin with, was found looking for other issues. Symptoms now are extreme fatgue; the kind where you cry all the way home from work some days due to exhaustion. I am burning up all the time; freezing my husband and co-workers, they even bought me my own fan at work like they use in the server room. Itchy scalp. At my ONC visit Thurs the CT scan had been mis-read, DR didn't catch it but I had gotten copy ahead of visit and pointed out to him. He didn't seem too pleased. When I described my symptoms he said he would leave it up to me if I wanted to go ahead and start Rituxin only but he wasn't sure it would help my symptoms. He seems to still be leaning to W&W as the growth is minimal. But to me...they are still growing! I also have a malignant tumor on the aorta at the bifurcation. He order more blood work to check for thyroid issues; overall my bloodwork is fine he says regarding hemoglobin, wbc

I haven't sought a 2nd opinion; felt comfortable in that we are just outside of Chicago, major nice wonderful hospital and the biopsy was read by two different labs which to me is 2 opinions. this Dr is close as is the hospital. But it seems he should have an opinion; not leave it up to me.

another thing, when my general practioner sent me in due to large nodes; he said he was convinced it wasn't lymphoma; just residual from the diverticulitis. He didn't become convinced until I had the PET. we thought maybe he was just trying to be the optimist.

I just feel confused; don't want to continue feeling this way but hate to start any kind of treatment if it isn't going to help the situation.

Just would like opinions from others who have been there, thanks for any input. Next appt is October 5 for me to decide. Sheila

drb_gbr
Posts: 2
Joined: Sep 2009

Hi,
I'm new to this :)

June 29th I was diagnosed with Stage IV Indolent Follicular Lymphoma. At the time I think every lymph node in my body was swollen and my left leg would swell every day. I started R-CHOP July 15. I had immediate results just from the steroids, so much so that I had an allergic reaction to the Rituxin, but that was from all of my lymph nodes (I had a lot) releasing at once. After the one treatment of CHOP all of my nodes went completely down, and my leg hasn't swollen once since! Some of the nodes swelled up a couple of times before the next treatment but each treatment brought them down, and the swelling, so far, has stopped with treatment number 5.

Since the first I've had 4 full R-CHOP treatments without a problem and right now definitely glad I started them. They have provided considerable relief. I'm ready for it to end and get on with surviving.

I feel for you, can't imagine waiting.

drb

lees1953
Posts: 20
Joined: Sep 2009

wow, they started your treatment right away!! and our diagnosis is the same? Do you have bone marrow involvement? maybe it had to do with the size of our nodes?? how large were yours? Mine are still defined as relatively small though enlarged. one of the more dangerous elements is I have a small tumor on the aorta in the bifurcation which is malignant with lymphoma as well; the largest node they intended to remove, was encapsulated with blood vessels so they could only biopsy. so I was cut from navel to groin due to all this and this was all last April!!!

God bless continued prayers...let me know if you don't mind the sizes of your nodes! Thanks, Sheila

drb_gbr
Posts: 2
Joined: Sep 2009

The nodes on my neck, shoulders, arm pits, diaphragm, and groin were very swollen, could easily feel them all. Also have a tumor on the side of my neck. Bone biopsy (THAT HURT!) showed 25% in bone marrow, making me a definite Stage IV. I had one node removed from near my collar for 'architecture'.

I'm 46 and in decent physical condition, with that and the stage, my onc decided he wanted to be very aggressive with the Rituxan and chemo both every two weeks. Had a CT for the last visit and all the nodes in diaphragm area went down as well. Hopefully after the 8 sessions a PT scan will show the start of remission.

I sound real positive, but also know how scary it is not knowing what do. Because of the things my onc found, he wanted to go right after it which I didn't argue with. I like to attack problems head on, this aggressive treatment is what i wanted. I try to avoid it, but still worry sometimes about not getting it all, future occurrences, etc, which I’ve discussed with my onc and he's given me options and different courses we could pursue.

I hope this helps. Its good share with someone who understands.

Dion

lees1953
Posts: 20
Joined: Sep 2009

good luck and God bless you and your family.

I had to chuckle when you made the comment about the bone marrow test.

DR had said there would be slight discomfort, I told him the last time a DR
told me that phrase I came home with a baby!!!

It hurt like hell. And to make matter worse, I went in the first time; had taken
my own pain relievers as it was 2 wks after my abdominal surgery. Nurse said lay flat on
my stomach, I said are you kidding? My husband was with me, he said she can't do that
look at her. I had 22 staples from my navel down. ONC had not even looked at the
surgery. So he tried to look at doing it with me laying on my side but then changed
his mind. So I had to make another appointment after I got the staples out and worry
about it for another month! And it is sooo painful, I said surely if you donate bone
marrow you don't have to go thru this, else no one would ever donate! he said NO.

Faith is a wonderful thing so I don't feel afraid, just apprehensive about things
to come. And I feel for my husband, we have only been married 5 years; I am 56, he is 59. He lost his mom to muscle cancer when she was 54 so he knows was suffering is all about
not that this will be anything like what she went through.

Good luck, keep me posted on your progress. My email is if you would want to update there. Thanks for your input, Sheila and I don't like sitting around waiting and doing nothing either, would prefer going on attack but don't want to expose myself unnessarily to drugs!!! what to do...:)

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