I'm glad I found this site and just registered. I was diagnosed with DLBC NHL 3B in April, and I just finished my 3rd of 6 chemo
treatments with R CHOP and have many of the side effects expected from the drugs. It started with back pains, and so not thinking it
was serious(I've been relatively healthy all my life) I began going to a chiropractor. When this didn't help and the back aches got
worse along with shortness of breath and very aching legs/knees I went to my PCP who diagnosed the NHL. They also found a DVT in my
right lower leg and I'm on Coumadin which has brought up other problems/contraindications. I'm trying to remain positive but must
admit I am shocked, scared and confused. I hope that participating in this forum will help. Any suggestions or words of encouragement
to help ease my mind?
Sorry you had to become a life member of this growing group, but welcome and make yourself at home.
Many of us have walked the road you are traveling on and will be here to help and support you as best as we can.
Best advise I can give you is read.. Read and read more to become familiar with NHL, also remember this is a chronic issue that in many circumstances is very controllable giving people a full complete life. Also maintain a positive attitude and find things to bring you joy and laughter, it will make the medicine/life go by easier.
Each of us react differently to treatments, but most treatments are doable and soon they will be part of the past and seem like a blurrrrrrrr.
Come back often and we will be here.
Thanks for welcoming me to the group, one I'd rather not belong too but slowly accepting the fact that I do. Also, you have given me great
advice and I will read, read and read more along with trying to have a positive attitude. Also, I will continue to participate in this group.
Thanks again Jim as you helped make today a better day!
Hi Steve, welcome to the group. Like Jim says it's all doable. I wanted to pass along a website that is very informative. I found out a lot of lymphoma in those pages. http://www.nhlcyberfamily.org/index.htm
I first had fNHL (R-CVP x 4) then 3 months after treatment for that I was diagnosed with DLBC and just finished chemo (R-CHOP) and radiation last Thanksgiving.
Hope you do well with treatments and these great people are full of info and give support in abundance.
Take care, Fran
Thanks you also for welcoming me to the group and thanks for the link. I'm sorry to hear that you were diagnosed with DLBC after
treatment for fNHL. How are you doing now? I hope you're doing well. I will be going in for my 4th round of chemo of 6 on June 25.
I'm also getting R-CHOP.
I am also new to the group as of today.
I was diagnosed February 24 with NHL after doctoring with my PCP since early January. My first symptom lumps in my lower skull that the nurse upon phone conversation brushed off as infected hair follicle. Beginning of february when. I had excruciating side pain, I too started with chiropractor. After two weeks when I realized wasn't helping found out was very enlarged spleen. I got one treatment in pa., but the rest getting at Mayo clinic in Minnessota.
Mine is stage 4 and I have had 4 out of 6 treatments (R-CHOP). I also had 40 percent bone marrow and a lot in spinal fluid that we are working to resolve now.
Welcome to the group. Your case sounds very similar to mine. I was figuring(naively of course)I'd go for some chiropractic sessions
and everything would be alright. Finally when the pain got so bad I went to get an MRI and that's when the NHL was found in the stomach, pelvic area. I'm going for treatment 4 out of 6 on June 25 and the oncologist said that he would make an appointment after that for a PET scan to see how things are going and I'm anxious about that.
Did you go for a PET scan after treatment 4 or if not were you told that you will be going for one?
I wish you well in getting to remission!
Good afternoon Steve:
I have not been on the board for months, but I came back today to see if any of my "chemo-mates" were still doing well (BTW...Hi gang).
I thought I jump in here and add a note of encouragement to your thread. I too had F-NHL and did chemo (R-CVP). This was not as bad as CHOP, but it did the trick. I've been on maintenance infusions (7 so far) and I've remained in remission. There are a lot of us who have made it to remission, so the light at the end of your tunnel is real. Keep a positive attitude. You will get there!
Greetings -- (and Hi Pat, glad to see all is well with you!)
I had RCHOP for DLBC and am now a bit over half-way through a two-year course of rituxan.
So Grandpa you have just had round 4 of RCHOP, and if it is anything like I had, it was not so bad, just the same general response. I found I got more tired after the fifth and sixth treatment. So just keep an eye on the chemo symptoms and keep your doc in the loop if things get wonky.
but is is doable, and all in all, as crummy as I felt before I started RCHOP, I had to admit, even with the fatigue and coordination problems, the odd adventures on prednisone and the chemobrain, I felt better physically overall. kinda odd, but that's the way it was. Of course, I was probably more messed up than I realized (I am now seeing some of the work I did while in treatment and ouch, I was a bit more goofed up than I realized).
I also had a scan after my third RCHOP, but for the life of me I cannot remember if it was PET or just CT. I only recall two trips to the PET truck (a mobile unit comes to town a couple times a month), so it probably was a CT. It showed I was clear of disease. RCHOP is very powerful.
So, keep the good attitude, realize this is doable, and really truly, it all is a blurr after you are done with it. Eat well, rest when you need to, and laugh as much as you can. Jim and the others are right, attitude matters.
The.reaction was some what Pemphigoid in nature, not severe but the skin rash affected arms and legs and might have been caused by Rituxan treatment. The dermatologist/oncologist as MD Anderson thinks I might be able to continue treatment if a dose of prednisone is used before the administration of Rituxan. But the last one to give the ya or nay will have to be the oncologist.
In the mean time I should be heading back home tomorrow and to MD Anderson on Tuesday. What a way to end a great vacation in the west coast from California to Nevada and ending in Idaho culminating in petting and being licked by wolves.. That will be a story for another time.
Best to all
Of course I had to look up but it doesn't sound pleasant.
My hubby, as he ages is developing all kinds of reactions to a variety of skin issues. He is a diabetic and his latest allergies: no tape of any kind, no antibacterial creams,, no non stick guaze pads, not even aquaphor or natural products like aloe gels. He breaks out in very painful blisters where ever these products touch his skin. He just had more squamous cell cancers removed, he has something cut out every year or so that usually involve stitches and in some cases plastic surgery. I hope your condition wasn't very painful.
We took a 30 day trip all up the East Coast in July. I hope your trip went great.
I am doing just fine,I did not have a major problem, just skin irritation, but it was enough of a concern to the oncologist that I might have had to be hospitalized if his worst fears had seen the light of day.
Nonetheless I can only look forward and move on.
Wish your husband the best, and I am glad you both had a great trio.
Hi Jim, Hi Fran, Hi Pat, Hi all!
I am off for another round of Rituxan tomorrow. two hours at work then I go the couple of blocks to the center, and then I will take the rest of the day off.
I just wish I could stay calm. This every 2 months routine, with excellent perfect bloodwork each time, yet each time I start with the anxiety....and all the what ifs....gee whiz I must like to torture myself. (I will blame the generalized anxiety disorder..haha, fooey).
Anyway, depending on how hard the benedryl hits me I'll maybe post tomorrow. All will be good.
Gee whiz, both you (Jim) and Fran got to travel this summer. I took a couple days off for my birthday and was gifted with a major brake job so no big travels for me (plus I use vacation days rather than sick leave days when I can)....but I do plan a trip to see my kid in a couple of weeks. just a 2-day trip, and a long drive there and back (rental car). It will be nice to get out of town, I would think my still lingering chemobrain won't be a hindrance. I did the trip last summer and I was in much worse shape and didn't like the sensation of moving fast.
so anyway I'm rambling, but I'm also so glad that all is good.
Boy this must all seem like the never ending story. I know Jim did R maintenance too. After my first treatment for fNHL the onc said I would get that maintenance but after the DLBC he didn't say anything. I think when I go back to see him I will ask about that. I want this crap to stay gone as long as possible.
I am glad you will be getting to see your young'un. I think of you all the time and our classmates from that time. I find myself backing off the computer some days. I just want to stop thinking of cancer for a few days at a time.
Love ya, fran
Hey Fran, yep I agree there are times when the last thing on my mind is lymphoma, but I guess that's why I hit the anxiety ramp big time right before the infusion.
Rituxan infusions have been really benign for me, more like an afternoon off in the lounge chair, get to yak with the nurses who were so kind and careful when I was in full chemo. They are super women, all of them. That part I like, plus, haha....the hospital has the very best sauted stringbeans and onions on the menu on Fridays. Sounds silly but even the nurse who tended me a lot over time agrees, those beans are magnificent. Surely not a reason to go get an infusion, but they are something to look forward to, simply done but I cannot replicate it at home for some reason.
My blood work was excellent again, got some lowdown from the doctor about some recent studies on chemobrain (posted them elsewhere on this board), and now I have even more exercise to do it seems. Is ok, I'll do just about anything to get my brain firing on all cylinders again.
Next stop is end of November. Which places my last R maintenance end of January or so. Wow, time flies. I'll save the anxiety for then.
Hi everyone. I feel like I fell off the face of the earth for a few weeks. For some unknown reason I have been fighting depression lately. I can't put my finger on what it is but I know I am also having fatigue that some days just wipes me out. I was doing so good with the energy level that this crud just hit me hard. I don't have another scan until Feb so it isn't scaniety either.
I hope all of you are up and running like deer! Take care everyone.
Sorry to hear that you are struggling with depression. I can relate to what you are going through. While I amd determined to cultivate a positive attitude during this struggle with DLBCL, I have tough moments of doubt and aprehension. A new pain in the area of my spleen has me a bit concerned and what is in store for me next. Sharing with friends like you on this forum gives me a much needed boost. Over the few months I have been following this forum, I have alway looked forward to reading your comments and following your progress. Please hang in there for us!
Hugs and wishes of wellness to you.
Steve, I hope that you find some comfort in the group here. They have really helped me through some random questions and extreme anxiety. It takes all types. And we all have something we can offer each other. I am so sorry for all the complications you are having. I hope they get better with a little bit of time...mine did. Take care of yourself and give yourself lots of credit, Delaney