Still in Shock--Wife Just Diagnosed w/ Non-Hodgkins B-Cell Follicular Lymphoma Stage IV

friendm7 said:

Small World
Kelly,

Wow, guess it's a small world. I'll definitely look up your sister. Need as many in my support network as I can possibly get.

Trina did round one of chemo on Mon and Tue this week. Still no side effects. I took the week off work to help her get through her first session and we are both surprised that she is still feeling good.

Man up above must be looking down on us.

Wishing you the best on this long roller coaster ride we are both on. With your permission, we can get through this together and learn from each other.

Mark

allmost60 said:

Great!...
Hi Mark,
Thats good news that Trina is still feeling good after her first treatment. Makes me hopeful that I might have the same good fortune after my first round. Thanks so much for sharing!
Sue

Hoppy23 said:

John,
He had almost all the
John,
He had almost all the known and unknown symptoms related to lymphoma. He had low grade fevers for a year, he had night sweats, fatigue and severe depression. His night sweats got crazier over time and we had to change his pajamas and sheets daily, he'd soak the pillows too. He also said he used to breath warm air. Like he had fever on the inside that didn't show on the thermometer.

He also had SEVERE joint/bone/muscle aches for months and we thought it was rheumatic pains, or maybe from the very cold a/c, or from any other reason. he was seen by maybe 4 doctors, nobody suspected lymphoma. One doctor even told him it's something mental, and gave him a pill like prozac. He had shingles months ago too, and it was very odd at his age. When I saw how much pain he was in and nobody is doing anything (we even suspected swine flu at one stage), I just picked up the phone, called the phone directory and asked them to give me any doctor's number specialized in blood diseases or immunity diseases. They only gave me his current oncologist's number and the moment she put her hand on his armpit and found this enlarged node, she KNEW. Once he had that lymph node removed to be biopsied, ALL his symptoms were gone !!! His internal fever like was gone, he wasn't sweating and his body aches were gone too. Weird huh?

Oh...for the year before diagnosis, his aches would be on and off...like they'd come for a week every month or every 3 weeks, he'd take antibiotics and feel better instantly. AT one point after diagnosis, one doctor told him how weird it was that cancer symptoms he had were relieved by taking antibiotics.

When he had a CT scan to properly stage his cancer, ALL his lymph nodes were enlarged, and his spleen was too showing more than one lesion of cancer too. His Bone marrow tested positive as well, but we never knew how much of it was affected. I guess all that is what made his onc decide on the R-CHOP not R-CVP or Rituxan alone. His was an indolent kind but was EVERYWHERE.

Hope that helps.

COBRA666 said:

symtoms
Liz,
I heard the same thing about 1 in 6 people having cancer. My onc said it should be 1 in 6 DIAGNOSED with cancer. The stats would be a lot higher if everyone that had cancer was actually diagnosed. So sad!!!!!!!

COBRA666 said:

Symtoms
Liz,
No, this stuff is not easy. The only thing right now that knocks it down is the chemo. We all react differently to the treatment. I was scared as well from all I heard about chemo and its effects. So far it has been pretty good except for the first round. The first one knocked me down pretty good. I kept thinking I hope they are not all like this. Each one for me got a little easier. I go for round 4 next week and hope that one goes as easy as the the last two. I do have days where I feel tired, but nothing that really keeps me from doing what I want. Others have said just the opposite. So its can be one extreme to the other. I feel your first one will be the worse. Thats when a lot of changes happen to your body and a lot will be going on. You will have bad days and you will have good ones too. Your first day of treatment will be the longest. Probably a good 7-8 hours. They have to make sure there is no reaction to the chemo so they have to be put in slowly. With me they put the rituxin in one day and the next day was the actual chemo (R-CVP). They may do this for you as well. They also give you an injection of benedryl to prevent any reaction. That will make you tired the rest of the day. Rituxin is not chemo,but a maintenance drug. After my first treatment of Rituxin I could actually feel where the tumors had shrunk in my abdomen later that night while laying on my back on the bed. I mentioned this to the onc. nurse the next day when I went for my actual chemo. She said that it was normal because the tumors were melting quickly. My stomach ached off and on for about 2 weeks because of the shrinkage. What had been there for probably years was melting within a day. It is a shock to the body to say the least. With the tumors melting so fast the organs were shifting around to areas that were previously occupied by tumors. Just had my mid way pet scan and they were down by 2/3's. Some were actually gone. Hang in there and take it one day at a time. Its easy to say but its all we can do and we will be here to walk you through it. John

nbergeson said:

Diffuse, Large B-Cell non-hodgkins lymphoma
I can see that I came to the right place for support! I am alone and have too much time alone to worry. I was diagnosed in February 2010, after they "fooled around" with biopsies that didn't tell them enough. The tumor is behind my heart, so they can't do surgery. I had three chemo treatments (R-Chop). It affected me but nothing like alot of people go thru. I responded very well. I then had 24 radiation treatments. I finished those in June and haven't been back to the onc since. I have an appt for a cat-scan and to see the onc the end of this month. My question is in regard to itching. When I was diagnosed, the onc asked me if I had itching, which I didn't have then. The last 6 weeks have been horrible with itching. Has anyone else had itching and if so, what helped? I have tried all of the over the counter things and a prescription for the itching. In reading thru this discussion, I have learned more than the onc has ever told me. He asks if I have any questions, but I never know what to ask. It will be great to have this support! I don't know about any of you, but when I am asked how I am doing, if I tell the truth, people don't really want to know. They just want to hear that I am doing well. I really don't have anone to listen to my fears or really want to know how I am doing, so I just say I am doing well. I didn't know until now that depression goes with it. I will be praying for all of you.

allmost60 said:

Your not alone
Hi..Please don't feel like you are alone. With this group you will have a whole bunch of friends to talk with, and we "DO" care how you are feeling. I've only had one round of chemo/R-CVP and so far have not experienced any kind of itching. Maybe someone else in the group will be able to help you out with some info. I have not encountered anyone yet that really didn't want to know how I'm doing, but this cancer thing is all pretty new right now, so maybe in time they might feel that way...sure hope not! When you need someone to talk with, just jump in here and there is usually someone around to give you support. I'm a night owl, so if you have bad nights I'm always hanging out close by. Take care and don't worry alone...let us help.
Love...Sue

COBRA666 said:

6 rounds of r-chop
Hoppy,
How many rounds of chemo is your husband scheduled for? Some have 6 and others have 8. I am scheduled for 6 and just completed round 2. John

Hi my dad is starting treatments on Monday.  What side effects have you experienced thus far?