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Anyone have Non- Hodgkin 4th stage lymphoma

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

I would love to chat with someone going through the same cancer therapy as I am - to learn of their struggles and side effects and offer advice to each other concerning our cancer treatment

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

(Just joking)..Welcome to our group tall floridian,
I hesitated answering your post, as I am stage 3 Follicular NHL grade2-typeA. From what I've read and been told, treatment revolves more around grade and type of cancer. I do know that a stage 1 aggressive subtype of NHL is easier to treat and possibly cure than is the indolent stage 3 or 4's. Seems odd that the aggressive typeB's respond better to treatment than the indolent(slow growth) typeA's, but thats what I've learned with my research. I had the R-CVP chemo which consists of Rituxan-cyclophosphamide-vincristine-prednisone. I finished 6 rounds as of Dec 14th 2010, and have since been doing Rituxan maint(scheduled for 2 years)infusion every other month...just finished my first year on Dec 20th. The hardest part of my chemo was the prednisone(steroid), as it made me very hyper and restless(putting it mildly). I also experienced fatigue which increased with each round, along with achey joints(hips and knees) and slight temporary neuropathy in my fingers and toes. Chemo is hard, but very do-able. I did not lose all of my hair, but it did get very thin and patchy looking, but has since grown back. It would be helpful if you could share what subtype- grade/type A or B, and which chemo treatment you are doing. This will allow others at stage 4 with the same cancer to understand better what you need to know and expect. I'm sure you will get more feedback from others soon. Take care and best wishes...Sue
Follicular NHL-stage3(no bone involvement)grade2-typeA(slow growth indolent)diagnosed June 2010. age 61

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Sue thanks for your reply - I'm 6'3 by the way-smiles. I'm on Rituxan maint every other month and like you have problems with prednisone - jittery, hungry all the time, and worst thing needing to urinate every hour 24-7.My doc is weaning me off the predisone - down to 5 mg now once a day and hope to be off it by mid January. Also in mid January my doc will perform a bone marrow test to see if the cancer is growing or if it's lessened. I've had great family support - my wife and daughter and brother and mom have been so great through this ordeal taking turns driving me to appointments, cooking foods I can tolerate and just having a positive outlook. I'm so fortunate to have a Christian doctor and his RN wife working side by side with me praying and going thru the cancer procedures and monitoring me like a family member. In June when I was released from the hospital after a nasty staph infection I was wheelchair bound and very very weak. Being 70 years old makes my recovery a bit more risky. Today, after 6 full chemo treatmets and one Rituxan maint I am getting around pretty well with my walker and even cook my own breakfast and lunch without my walker so I've come a long way thank God. I look forward in 2012 to greater increases in strength and mobility and prayerfully a new lease on life. Thanks again for your reply - hugs - Steve

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Welcome to the group, I had stage four NHL, B cell lymphoma, went through eight cycles of rituxin. This chemo for me, was much easier ( I say that loosely)then my first cancer which was treated with cysplatin, the side effects were much harsher. I never really got nauseous as I did the first time. The hardest thing for me was the prednisone drug.It made me very emotional. Fatigue also plays a big part in this treatment. It's been a year and I'm still worn out. Just take it a day at a time, it will be done before you know it.......

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Vinny I take it that you are Italian? I am also so we had to change our Italian diets a bit- smiles- although I still have my pasta once a week. Like you I have stage 4 NHL lymphoma diagnosed in June, 2011 by a PET Scan procedure. I've had 6 rounds of chemo both Rituxin plus Vincristine and Cytoxen- am now on every other month rituxin maint and my doc is weaning me off of prednisone. My biggest challenge has been the 24-7 need to urinate which works to make sleeping a bit of a problem. I'm hoping that by getting off the predisone this problem will ease a bit.I do take it a day at a time and am so grateful for a loving family including my mom at age 98 who calls me every day to encourage me and offer pasta dinners (smiles) Like you I have B cell lymphoma so we have the same cancer. I just turned 70 in November so my recovery is a bit more tricky at my age. My blood doc is so devoted and treats me like a son even though I am 12 years older than he and his RN wife who gives me my chemo treats me like a son. They had 3 daughters- one of which was killed by a drunk driver while she was in college.I can say I am blessed to have such support and hope I can be an encouragement to others in this forum. Be blessed my brother, and thanks again for your reply - let's keep in touch OK? Steve

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Haven't met a pasta I didn't like! I'm 52, sorry about your one daughter, it's so senseless what that happened. Stay strong, things will start to get better. They never put me on the maintenance chemo, probably because I had it before with my head and neck cancer. I check in periodically so I sure we will talk again..... Vinny

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Steve,
Sorry I am not Italian. Just a mixed breed of all the other nationalities.LOL. I also am stage 4 with follicular NHL.62 years old. Diagnosed in May 2010 on a routine urology exam. Never had any symtoms. I went thru 6 rough rounds of R-cvp. They got rough after round #3.Never had any urinary problems but did notice all kinds of bubbles when I did have to go. I posted that a while ago to see if anyone else had that problem. I am now on the 2 year Rituxan maint. plan. So far so good. Keep us up to date. John(FNHL-4A-1-5/10)

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Hi- I too notice bubbles when I urinate and believe it's from the chemo so not too concerned with that. Before I was diagnosed in June I experienced terrible weakness and ill-fellings always thinking I had the flu. I am anemic and was treated for that with prednisone but otherwise very healthy. Then a staph infection hit me hard- I almost didn't make it - spent 14 days in the hospital a very sick man. They gave me a Pet Scan and zap there it was clear as a bell- lymphoma 4th stage NHL. I was devestated- but tried to stay positive and focusing on getting better. Today, I'm doing better, on Rituxen every other month and finally am able to walk slowly without my walker. I've had wonderful family support and my doctors have been such a blessing. I'll continue my treatment and pray for the best. Thanks again for your comments - Steve

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Hey Tall - we have lots in common! Just celebrated my 69th bday a few weeks ago. Follicular NHL, stage 4, indolent, B cell. Discovered by accident on a PET scan for something else 2 1/2 years ago. After a year of two chemos for an abdominal tumor that refuses to go into remission, I'm now on Rituxan every two months for 2 years. I live on the Space Coast of FL and also have a wonderful Christian Oncologist - without him my husband and I would not have come this far with such hope and positive attitudes. If you decide at any point to go to a research/teaching hospital, I highly recommend Moffitt in Tampa -they are tops.

I wish you well in your journey - sounds like you've been through a lot already. Glad you found us on this site - there are many wonderful people here who will offer support, suggestions and become your buddies in dealing with our type of cancer. Fondly, Fran

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Fran thank you for your comments. I'm doing really well now that I'm on the every other month Rituxan maintence program. I had a wonderful Christmas with family - was able to eat much of the usual Christmas goodies. The real neat thing is I'm now able to walk a bit without my walker - first time since I had a terrible bout with staph infection in June. It was through this infection that they found my lymphoma cancer in a Pet Scan. I'm staying positive - taking my medication and trusting God for His healing. Thanks again, Steve

trustinJesus
Posts: 49
Joined: Oct 2011

My dad has stage 4 Non-Hodgkins Large B cell Lymphoma. He just went through 6 treatments of rchop. He did pretty good in the beginning. He said its doable. As the treatments go on they get harder and take a toll on your energy and body. He lost his hair three weeks after the first treatment. He later lost almost all his hair on his body. No eyebrows or eyelashes. He had alot of leg cramps and numbness in his hands and toes. These are all pretty normal responses to the chemo. He only got night sweats once (which was scarry). Every little sickness makes me think the worst. This whole experience is a roller coaster of emotions. After the 3rd treatment he had a pet scan and it came back clean with no signs of cancer. This was an amazing moment of happiness. He just had another pet scan and we are waiting on the results. My dad has been feeling really bad and had an episode of throwing up ( we are hoping it was just a flu bug). I hope this info is helpful. I know how it feels when you are searching to talk to someone who is going through the same experience. Take care and God Bless!

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Trustin - thanks for your reply. I've been really blessed to have lost only a little hair and control my nausea with medication. I still have to watch what I eat since my system is very sensitive. I got night sweats mostly at the beginning of my chemo treatments but they have subsided now and i can sleep without having a totaly wet bed and pillow. I do have a urination problem - have to go almost every hour 24/7 but I'm getting use to that. I try not to drink much before going to bed which is hard because i'm always thirsty. Staying positive and trusting God has brought me through these last 6 months and will help me both now and in the future. Thanks again, Steve

FightForMom
Posts: 2
Joined: Jan 2012

My mom has stage 4 nhl lbc too. She also had 6 cycles of R-CHOP but unfortuately hers grew back after the 4th treatment and quickly too. Something just didn't look or feel right so we insisted the doctor see her before her appointment that was 5 weeks out. Fortunately she is on a new protocol (EPOCH-FR) and we are cautiously optimistic. It was exhausting for mom going to research doctors and such but it is all a means to an end and if this works and is what she wants that is payoff enough. I wish you luck and it is an emotional rollercoaster but if your dad is anything like my mom, his spirit will fight for him when his body cannot.

Mom just went in to the hospital for her second treatment and no PET scan yet (Dr says too ealry) but apparently even a sonogram was positive showing no extra fluid in her abdomen which has been a huge problem, and sign, of the cancer growing.

Good luck and hope your dad gets a good report from the doctor.

kim23
Posts: 5
Joined: Jan 2012

I was diagnosed in 2007 with stage 4 nhl folical bcell there as been no sighns of the cancer since my treatment finished in August 2007

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

CONGRATUATIONS!!! Always great to hear stories like this. John

kim23
Posts: 5
Joined: Jan 2012

I am in the UK and I am always pleased to give people hope it is not the end with this cancer you can get back to a normal life. My best wishes go to all on this forum. Kim

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Thank you Kim for sharing - Steve

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

Hi Kim,
Five years is awesome! I also have Follicular NHL and it warms my heart to hear success stories as yours. Best wishes for continued success! Love...Sue
(FNHL-grd2-stg3-typeA-diagnosed 6/10) age 61

po18guy
Posts: 241
Joined: Nov 2011

I was diagnosed with aggressive Peripheral T-Cell Lymphoma - NOS (unspecified sub-type) in July, 2008. I had at least 54 nodes involved above and below the diaphragm, as well as bone marrow involvement. I received four cycles of CHOEP (aka EPOCH), followed immediately by four cycles of GVD. I went into complete response, but immediately relapsed. I was scheduled for salvage therapy and best wishes, but a clinical trial was offered to me. I signed up and went into remission again. No evidence of disease now for 34 months, which is almost a record on this study drug. Each day is a blessing, and faith has seen me through the journey.

allmost60's picture
allmost60
Posts: 3172
Joined: Jul 2010

34 months...thats wonderful! I agree...each day "IS" a blessing and keeping our faith is absolutely a must! I'll keep you in my prayers for continued success! Love...Sue
(FNHL-stg3-Grd2-typeA-6/10)

po18guy
Posts: 241
Joined: Nov 2011

Thank you so much for your prayers, as they are the thread by which my life hangs. Doctor, who is not a religious man, calls my case a miracle, and we know who performs miracles! Odds were against my finishing 2008, then again in 2009 when I relapsed. Yet, here I am in 2012, approaching 4 years post Dx. Amen!

trustinJesus
Posts: 49
Joined: Oct 2011

What kind of treatment did you have in the trial that made your cancer go into remission? My dad had a clean pet scan two months ago at the half way mark and now its back. He goes Tuesday to get an intense chemo treatment and he has to stay in the hospital for 4-5 days(not sure yet on the name of treatment)to monitor him. Later down the road a stem cell transplant. We were crushed. Its seem really aggressive. It seemed like rchop worked for a little bit and then the cancer just overpowered it. I am feeling overwhelmed and depressed. I just keep praying and putting my trust in Jesus.

po18guy
Posts: 241
Joined: Nov 2011

For the record, I received four dose-intensive cycles of CHOEP (aka EPOCH: cyclophosphamide, doxorubicin, etoposide, vincristine and prednisone) over two months. Per the plan, it was then stopped and immediately replaced with four additional cycles of dose-intensive GVD (Gemcitabine, vinorelbine, and pegylated liposomal doxorubicin). This was a strategic regimen designed to disable a rapidly mutating T-Cell lymphoma. In my case, it provided a complete response, but I still relapsed immediately. What was left at that time was in-patient "salvage therapy." While we were discussing that, a clinical trial aimed at relapsed PTCL opened up. I went onto a novel non-chemo HDAC inhibitor that put me back in complete response. Unfortunately, there is no protocol that I am aware of to use this regimen against a B-Cell malignancy (or any evidence that it would be effective). However, there are certainly options available for relapsed B-Cell disease.

Glen G
Posts: 2
Joined: Jan 2012

I can get past the metal tasting juices & the fatique but i'm now battling with rashes..don't know if it's caused by the treandra or my body not having the strength to battle this problem...

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