Got diagnosis today of Diffuse Large B-Cell Lymphoma - Intermediate growing, will start R-CHOP soon

Got diagnosis today of Diffuse Large B-Cell Lymphoma - Intermediate growing, will start R-CHOP soon. Going to have a PET scan and a port put in, supposed to find out more info tomorrow on when I will start chemo. Wish me luck! Any advice or information you can give me will be accepted. I'll look thru the site to see who else has this same diagnosis.

I had the same diagnosis and the first r-chop treatment 4 days ago. The session itself went well though it took about six hours because they take it easy first time around. I was a little queasy for two days afterward until the drugs left my system and I quit the prednisone after the second day with an OK from the doctor because my eyes reacted to the high dose prescribed for four days after the session. I'm feeling good now. I wish you well.

Thank you for replying, glad to hear that your first treatment went well. What is the prednisone used for?

Pumpkin-
Sorry to hear of your dx. Y Worry makes a good point-- drink fluids and plenty of them. That will make a tremendous difference. Flushing the body of chemo is an important reason; another is because chemotherapy will kill the cells in your mouth (throughout your entire GI tract in fact), leaving the mucus membrane rather vulnerable to mouth sores. While these aren't directing life-threatening, they are said to be painful and uncomfortable, and they could very well impede you from eating or from wanting to eat --- and if oncologists look at one prognostic indicator more than others, it's weight. You don't want to lose a lot of weight. The steroid (prednisone) may prevent that to some degree anyway, but you don't want to stop eating.

So staying hydrated and maintaining good oral hygiene helps to prevent those sores from developing, and makes eating more palatable. Your taste buds might change a little, which can make water taste metallic, which would dissuade you from wanting to drink water so to prevent that you might want to get a water filter so that water remains palatable to you.

Ross

Ross,
I'll second your suggestion to use a water filter. When I was in the hospital, the city water there was difficult to drink but at home I have carbon filtered well water that goes down easy. There's probably a difference from a health standpoint also.

Dear Pumpkin, I am sorry to hear of your DX, but I am glad you are starting treatment soon. From what I have read there is a high sucess rate for this kind of Lymphoma and it reponds well to Chemo. You sound like you have a good team looking out for you. God Bless and keep us posted.
KBeale

Hello all,
I had a busy weekend, able to catch up on this site now and thank all of you for replying to my posts. Didn't realize how much this was affecting my family that I'm going to have chemo, they think it's a death sentence. I'm hoping for the best though and I can understand their concern but I've done a lot of thinking about this and am ready to get started! One thing that I'm not going to like is the nausea and I see that they have some good meds to help with that. I know that the one they gave me after the node surgery really helped as well as the fan they put near my face, it helped to have air blowing on my face. I have appts the week of the 29th for my port placement, CT/PET scan and echocardiogram. Then from there I find out what is next. I will read thru your posts and answer as soon as I can. My next question was going to be about the mouth sores, I had seen someone else talk about that and I was going to ask how that happens and I see that you answered about that. Also, I will bring water with me to drink like you said. Never thought I would have cancer so I've always avoided anything to do with cancer but now, I'm very aware of it and I want to thank all the researchers who have found ways to treat lymphoma as well as all cancer. How often is chemo usually prescribed, the doc said I will have R-CHOP every 3 weeks and after the 3rd treatment they will check to see if it is working and if it is, they will continue with R-CHOP. I still need to look that up to see what each initial stands for.

Hi Pumpkin, I have carried a NHL diagnosis since 1996. It recently converted to the more aggressive LargeBCell type. The best news about the change is that it is more treatable than the indolent type. On 12/10/10 I had my 2nd CHOP–no Rituxin this time as my C-20 does not respond. I did have Rituxin several rounds which put me in a wonderful remission.I feel pretty well adjusted to the chemo and have developed a time line for the treatment and following 21 days. I know I will not feel good for 10 days and rebound the next 10 days and we schedule accordingly. The worst is staying out of crowds and screening friends who might have colds or worse. Our immune systems are no longer working for us, so I am trying to avoid as many potential “germ” situations as possible. The alternative is not pretty!!In reference to R-CHOP you should be able to get print outs from Oncologist about these meds. I would love to hear from you. I have gotten lost in this site, so hope I am on target. I used to chat with the prednisone reaction group but cannot seem to find them again. Oh Well, Happy Holidays and make the best of the good days, Jean

Hi all

I am 46 years old and newly diagnosed with Diffuse Large B Cell Lymphoma. I had a large lump develop on my forehead and had this biopsied. The biopsy results took forever to get because the labs locally could not make a definitive diagnosis. The initial diagnosis was follicular lymphoma but the biopsy did not react to the stains that follicular lymphoma normally does. I had a PET/CT scan that indicated extra nodal activity on on side of my neck and on top of my head. The good news is that it is not in the bone as per bone biopsy. The cancer is a Stage 1E. The doctor said that this case is "highly curable".

My background. Well I am a Registered Nurse. I do not work in the clinical setting. I hate needles. I go to the doctor for anything and my blood pressure usually shoots up about 20 points.

I had my first round of R-CHOP. To tell you the truth I feel that I can live with the cancer but the thought of the Chemo is almost suffocating at times. The tumor on my forehead literally started to shrink during the initial treatment. After almost two weeks the tumor is gone. I am not looking forward to losing my hair. My wife says I would look better without hair. I have a job where I travel during the week. I am concerned that the means I have to support my family will be effected.

Thanks Mike

Hey Mike-
Welcome to supportgroups, sorry to read of your dx but I'm glad to hear you've started treatment and are on your way to wellness.

In case anyone is wondering, Mike's diagnosis of IE means that he his cancer is limited to a single, extra-lymphatic site (meaning a site that is not part of the lymphatic system) without involvement of the nearby lymph nodes-- in his case it's in his head.

Ross

Stage IE indicates cancer outside the lymph node and in a different organ. In this case the Skin for which I am very thankful. Also most Lymphomas by the time the get to the diagnostic part are most at stage IV.

Hello Mike, Sorry to hear of your diagnosis, but curable is the magic word for sure!! I am also an RN but of the retired type...hallelujah!!and quite a few years now. My recollections of chemo were horrific and am happily discovering it is not as bad as I anticipated. I still experience about ten days of the uglies and ten good to really good days out of the three week interval. I hated the thought of hairloss, but have convinced my self bald is beautiful. I love my collection of wigs and scarves. Bald men are handsome and very in at this time. Make the best of all your days, try to keep out of the pity pot. I had follicular NHL since 1996 and it recently transformed to Large B Cell. After two treatments I am feeling so much better than I did all last spring and summer. Something is changing and that makes me very happy. Next treatment Jan 7 and the routine starts again. Good Luck-Jean

Thank you so much Jean,

My next Treatment is Jan 6. Can anybody tell me how they handled the effects of Chemo after each cycle. What did you do to make it easier on yourself after. What do you do before each treatment to help after the chemo.

Thanks

I will have my next CHOP on 1/7/11. Things I have done to help me--lots of rest and do not over do. Stomach queasy I dring camomile/mint combo or plain camomile tea. Very soothing. Also ginger ale is really good for my gastro stuff. Burning eyes= warm compresses. For the shakes and agitation from the prednisone I got a script for ativan and a sleeping med. Cannot go without sleep and keep away from too much sugar and caffine. Aches and pains I chug tylenol; when really bad I have script pain med.-tylenol with codein. Did not want to get into oxy. etc. Hope this helps. I too would love to read any other hints to get past the bad days.
Happy New Year to all, Jean H

Hello Mike and Jean, welcome to the group. This site is where I have found the most info about lymphoma. Also, it helps that I'm meeting people with the same dx and going thru the same treatment. Mike, after reading about your dx, I have some questions. I thought that lymphoma was mostly contained in the lymph nodes, didn't know it could be elsewhere unless it had already spread beyond the nodes. I'm going to read about this some more. About 25 years ago, I developed a cyst on the top of my head, after several years of having it there, I decided to have it removed. They did a biopsy on it and said that it was benign. Then a few years later, two more cysts grew on top of my head about a couple inches away from where the first one was located. About 10 years ago, I started experiencing hot flashes from the neck up and they have continued on till this day. I thought it was menopausal symptoms so I didn't think twice about it. But now, since I found the enlarged node on the left side of my neck in June and getting diagnosed with DLBCL in early November after my biopsy, I'm thinking that those hot flashes have been lymphoma. Maybe it has been indolent but recently changed to aggressive? I read that your 'bump' has decreased in size since your chemo, Mike. I had my first chemo on Dec 6th and the cyst on my head hasn't shrunk so I guess it's not cancerous but it makes me wonder about it though. Anyways, so glad to meet you Jean and Mike. My next treatment is on Dec 28th. My first treatment went well, the prednisone for the 5 days afterward kept me wired. Two times, I did take a phenargan pill so I could sleep at night. Luckily I haven't experienced nausea and I'm very thankful for that. I've been drinking a lot of fluid. Pretty much the first day, water started tasting different. I drink filtered water and never have a problem with drinking it but with the change in taste, I have been drinking flavored water or sodas. I like lemons so I've been putting lemon in my water with a packet of stevia for sweetener. So, for the first two weeks, I kept waiting for something to happen and it was all good. Then I started experiencing constipation. I was eating watermelon, grapes, oranges, etc and that didn't even help. It got so bad that I had to have a suppository. So that is one caution I have for you is to take a stool softener before it gets too bad. I asked the doctor about it when I saw him on the 23rd and he said it was okay to take the stool softener, he was going to prescribe something but I told him what I started taking and he said that would be okay. Two weeks to the day after the chemo, my hair started falling out!! I thought, 'I'll just put it in a ponytail and see how much longer I'll keep my hair before I decide to cut it all off' The next day when I washed it, more fell out and I said, 'forget this, I'm going to shave it all off!!' I had always wondered why people shave their head so soon after chemo, now I know why, especially when I was eating popcorn at the movie theater and a big hair got in my mouth as I went to eat the popcorn!!.... I'm taking this a day at a time and not trying to look at the whole picture at once. So good to be able to talk to you all!! Have a Happy New Year and may this coming year find us cancer free!!! Marge :o)

Pumpkin-
Lymphoma can develop at any place in the body where lymph travels, which is, broadly speaking, most everywhere in the body. As an extreme and recent example, you could develop lymphoma of the ankle. However most develop at sites where nodes are clustered together. When on the skin, it's known as cutaneous non-Hodgkin lymphoma, and typically will affect the T-cells (although it sometimes affects the B-cells). In cutaneous lymphoma, the question is whether it began in the skin (primary) or spread to the skin from elsewhere in the body (systemic or secondary).

Ross

Happy 2 Days after Christmas all, Re. extra nodal lymphoma: Yes it definately can ivade other tissue such as muscle near the affected nodes...from personal experience. After treatments I can feel via pain the action taking place in muscle areas that lit up on PET scan. Anybody have a good fix for sore and burning tongue and gums?? this interfers with satisfying my horrendous appetite from the prednisone!!!Probably just as well as I would blow up like a balloon. Pumpkin: good health on your treatment tomorrow. I have a FREE week extra between my Rx's. Bad news is no crowds for me. Better safe than sorry. Too cold here in sunny Florida to go out anyway...in the 30's, but no snow!!Happy thoughts and prayers to you all., Jean

My Doctor told me to take a bottle of water such as the standard 16-22oz bottles you see in the store and add one teaspoon of salt and one teaspoon of baking soda. Shake it up until dissolved. Use this to rinse after you brush your teeth and as needed. I found that I can do this at anytime and there is no aftertaste even when I eat or drink right after rinsing with this. I really prefer this mouth rinse to regular mouthwash even without the ongoing chemo. I rinse my mouth with this I think I counted 8-10 times in one day. If you look at it the cost of the water, salt and baking soda is very reasonable as well. Also remember to drink a lot of fluids. The Oncology nurse says a goal is to drink at least 3 quarts of something each day. That will help too.

God Bless

Mike

Thank you for the info, Ross and Jean. Evidentally, I haven't read everything about NHL yet! :o) I had been seeing posts where someone has mentioned 'extra nodal' and was wondering what it meant, so much to know!! I don't want to 'slam' my doctor but he's not very forthcoming. He's of the 'old school' where he prefers to read results from the CT scan. I told him I wanted a PET scan as well and he said that is okay but he likes to see the CT scan because PET scans can show areas that have arthritis that are mistaken for cancer. Sooooooooo I don't think he really looked at my PET scan results and the CT showed that there are enlarged nodes on the left and right side of the my neck and he said that I'm stage 2. That's it, he didn't go into much detail. As I was leaving, I asked for the paperwork of my results and he handed me one page, as I was reading it I saw that there was supposed to be another page so I went right back to him and asked for it and that's the page that had my PET results!!! Found out that the area where my lumbar and sacrum meet (L5-S1) I have what is called 'spondylosis' and there is some kind of activity in my spinal cord. It was news to me, I don't have any back pain. Anyways, after my 3rd chemo treatment, I'm supposed to have another CT scan to see if the R-CHOP is working. It reassures me to know that even if I could be at stage 4 that the R-CHOP is supposed to help kill the cancer if it has progressed that far. I'll just have to wait and see, taking it a day at a time. Jean, thank you for your well wishes on my treatment tomorrow. :o)

Remember one of the most powerful tools in fighting this cancer or any other disease is empowerment and knowledge. You have the right to see what is on your clinical record and also to have a personal copy of these results. My wife always requests copies of all my lab work, and tests. Also do not be afraid to ask questions as to what this or that test result means. I am not saying you need to be mean just show you are being proactive in your own care. All interested parties participating in your treatment of this cancer will benefit.

Hang in there and God Bless

Mike