Non Hodgkin's Lymphoma Friends
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NON-HOGKINS LYMPHOMA

SAB BUT TRUE I WAS DIAGNOSED WITH NON-HGKINS LYMPHOMA BACK IN 2010..THE ONCOLOGIST DECIDED TO NOT TREAT BECAUSE MY CANCER WAS SUPPOSED IN SLOW GROWTH ( WATCH& WAITING).. SAD BUY TRUE !!! 12 MONTHS AGO I STARTED TO HAVE EXTREME ABDOMINAL PAIN. WHEN TO THE DOCTOR & PERFORMED A PET SCAN..A MAJOR SHOCK BEFORE I HAD TUMORS IN MY DIAGRAM & TUMORS IN THE LINING OF STOMACH.. NOTE: EXTREME PAIN ALNG WITH EXTREME HOT/COLD SWEATS..I SWEAT & THE SWEAT IS HOT & THEN WHEN BECOMES VERY COLD/BURNING....QUESTION: THE DOCTOR WAS ME TO START RITUXAN ( 5 WEEKS COURSE...FOUR DAYS A WEEK & THE TREATMENT 4/5 HOURS DIP) QUESTION: HAS ANYONE USE RITUXAN ???? MOST OF ALL !!! WILL THIS EXTREME HOT/COLD FLASHES EVER GO AWAY ???? THANK U THOMAS

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Hello, I was diagnosed with stage 4 Mantle Cell Lymphoma 8/2017. Was also slow grow and was on wait/watch. All good 2/2018 but like you, on 6/2018 had stomach problems, CT and tumors in stomach. Started Retuxan (4 weekly doses plus daily Revlimid). After second Retuxan infusion, I developed a severe reaction and ended up in hospital for 5 days. Stopped all treatments, recovered, went on a 3 week international trip, came back on 8/13/2018 and all my symptoms were gone, blood numbers all good. Doctor said this phenomenon has happened before. I will go back to the Oncologist end of September for a CT to see if the tumors have shrunk. I feel like I am in remission with no symptoms and will keep on traveling. I am female going on 80 yo.

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Hi Thomas, i to have non Hodgkin lymphoma stage 3 , had growths on my lymph nodes in necj, groin and armpits , also growths on my liver. Had extreme night sweats, haematologist started me on RCVP chemo which included dietician and had 6 month course of treatment , now on maintenance treatment every 8 weeks of producing and night sweats gone and am in remission. It was only my first infusion that took 4-5 hours, the following ones were very quick, couple hours at most. The maintenance treatment is just an injection in your tummy every 8 weeks and takes 5-10 minutes and is all bearable . Wish you luck with your treatment , Linda

Dietician is an immunotherapy treatment that helps your own cells fight the cancer

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Meant rituximab is an immunotherapy drug

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HI OZZADIAH...U R GOD SENT..WHY U MAY ASK ??? SAD BUT TRUE !!!! MY WIFE LEFT ME (30 YEAR) WAS MARRY 4 30 YEARS.. SHE DROP KICK ME FOR A VERY YOUNG BOY...SHE IS 65 & HE IS 24 YEARS OLD. I HELP THIS YOUG MAN FOR OVER FIVE YEARS DURG RECOVERY...BUT ALL THE HELP I PERFORMED FOR HIM (DUCAN) ,,HE HAD SEVERAL AFFAIRS WITH MY SOON 2 B EX-WIFE. OF COURSE !!!! THIS BREAK UP DID NOT HEL MY CANCER ISSUES.. WELL ENOUGH OF THAT NEGATIVE HISTORY. THANK U AGAIN & AGAIN 4 POSTING UR EXPERIENCES WITH CANCER.. PLZ KEEP IN TOUCH..THOMAS

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Hi Thomas, thank you for your kind reply, sorry too hear about your past, wish you well with your treatment. I'm lucky I have a really supportive partner and in laws. Hope you have some support to get you through this. Macmillan team were also a great help as we're the people on this site, wish you well , linda

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I was diagnosed with SLL 3 years ago had 80% of my nymph nodes enlarged and bone marrow. Had Rituxan alongside chemo meds. The Rituxan worked within hours and swelling reduced. Had to stop after 4 rounds as it worked too well wiping out red, white cells and platelets. However was fine after blood transfusions. Now back on watch and wait.

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I had chemo therapy to treat my NHL - Follicular. The Chemo was RCHOP with R standing for Rituxan. The CHOP is the Chemo, while Rituxan is a immunotherapy. I then had 2 years of Rituxan as a "Maintenance" therapy. The treatment worked well. I went into remission during the RCHOP and into full remission during Rituxan treatment.

As for sweats, I sweat an excessive amount at least once a day. It usually occurs in the morning and often I do get very "hot" feeling. I have been told it is part of having this type of cancer.

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Treatment type depends on what type of NHL you have (~63 different types) and what the labs.biopsy show. Several good information resources are lymphomation.org/#what-is-new and lymphoma.org/

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Hello, I was dx'ed almost 2yrs ago with follicular lymphoma with abdominal and axillary lymph node involvement. I chose Rixtuxan 8 weeks of tx followed by maintenance tx q 5-6 weeks ( tried every 8 weeks but fevers, itching and pain returned) vs. watch and wait and happy I did. Rixtux has been well tolerated with resolution of symptoms. And scans are clear! Best of luck- go for it and feel better. Hugs!

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Had NHL Aggressive Stage 4: Did R-Chop Chemo Treetment 6 Rounds over 8 weeks. For the extreme pain, was on Fentanyl Patches (3/day cycles), & Oxy for overflow pain, for 2 months.

Started getting the night sweats after round 3 of the R-Chop treatment after getting food poisoning from chix Salad. The night sweats were awful. Would wake up drenched 4-5 times a night. Got plastic covers for my bed and pillows, kept me From ruining my bed. Started using a pad fiberlinks 800-761-8881, which helped with the sheet drenchings, just wash and dry out the pad in the morning. Kept 6 pajama bottoms and tops on dresser, ready to change every couple of hours. So each morning had laundry to do, or at least the dryer.

I went through most of my treatment in the winter, felt like I was walking down the refrigerated grocery store section naked most of the time. During the day was really cold, went to Dicks Sporting Goods and Purchased 3 Pairs of 100% Cotton Thermal Tops and Bottoms, these helped save me.

My wife likes it cold in our house so we would battle over what to set the temp to I wanted it at 80, she wanted it at 65. During Christmas Week our Furnace broke down, felt like I was going to freeze to death. Got a plug in heater that helped until we got the furnace fixed.

The night sweats did not start to minimize until about 6 months after treatment. After 21 months in remission, no longer have the extreme temp fluctuations.

Don’t really know or understand why the temp fluctuations happened, they were just awful, really understand what your going through. If I had to guess the root cause of the issue would be fear, toxins from cancer, toxins from treatment.

The Night Sweats will go away over time, no rush. Hang in there & Good Luck & Bright Blessings!!!!

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I have B-cell NHL involving only my bone marrow, no lymph nodes. After an administrative oversight I was finally fully diagnosed 18 months after the initial discovery. I consider that my wait and watch period : ) What sent me to the doctor was extreme fatigue. I was so tired I had to pull over when driving because I HAD to sleep. I am a 61-year old woman in otherwise excellent health.

I've had 4 rounds of Rituxan. The first treament was excrutiating! I felt like I was giving birth to a full grown human. Apparently the oral meds (steroids, Benedryl, and anti-nausea) hadn't kicked in and the drug went directly to the pelvis. Yikes! The doc wanted to stop but by then I'd had so much intravenous medication I couldn't drive home so I asked to finish. I did. Round 2 they gave me intravenous meds so it went better, and rounds 3 and 4 went off without a hitch. I combined my Rituxan with modified diet (I needed more protien) and continued aerobic exercise (I was too tired to lift weights).

I have a PET scan and bloodwork for oncology follow up in mid-October. I feel really well and know that I am blessed to come this far this fast. At the October meeting we will decide about Rituxan as a maintenance plan. I am in favor as I have no desire to let the NHL get a foot hold. I've been reading a lot of studies (I'm a doctoral student so my access is pretty immediate) and they point to the maintenance plan as low risk overall. I think it will largely depend on the blood numbers. If the Rituxan affected only the rogue lymphocytes then I'll be the happiest woman I know.

My advice is to learn all you can in a positive, scientific manner. Avoid the hype (the drug companies put that out) and the negative crap that seems to be pervasive in our society these days. Scientific studies consistently find a positive mental outlook enhances health no matter what the circumstance.

I'm thankful to those who share both their stories and their "hacks" for getting through the treatments. I have found cancer to be a place where I've found out who really cares for me and simultaneously one of the lonliest places on the planet. When your whole body is in rebellion and you are inside of it; seek peace. I pray you, and all who are facing this disease, health and happiness!

Tiger

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I did not have the extreme hot and cold sweats. Retuxin is an immunity builder. It is not chemo. I had no issues the first time I used it. I was given a pre dose of benadryl before the retuxin. The second time that was not the protocol so o did not receive the benadryl and about 45 minutes into the infusion i began to have a reaction in my throat and tongue. The retuxin was stopped.

I hope this helps.

Carol T

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