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NHL--Our Stories (if you want replies, start a new thread)

MT2433

New member
Newbie

New to this so here I go...In August 2013 my husband began with a relentless cough more annoying than anything. He decided one night after work to go to the walk-in. I went with him and asked the doc if he would do a chest xray. He said his lungs were clear and o2 was normal and there was no medical reason. I pleaded and insisted as my husband had been coughing for about three weeks. The doc agreed and did the xray...he was shocked at what he found. A large mass in the mediastinum and that started this life changing adventure.

CT scans, biopsy, PET confirmed DLBC or PMBCL (not sure) NHL. We were in shock, my husband is 34 and we have three children. Fortunately it is stage I and he started treatment immediately. He is doing 6 rounds of DA-Epoch-R with Neulasta. He just finished round three and it took it's toll. The bone pain, mouth sores, and fatigue...i am worried to see what the next three rounds look like.

So I am here looking for support, inspiration or info from others who are going through the same
 

frankiesgal

New member
hi, new here. DH noticed a lump on his neck in about July/August. A month later there was one on the other side. Then he got a large one in his groin which also came with redness and pain. He was lethargic with no appetite. Finally in the end of August we were visiting my sister and decided on the way home to stop at our local clinic for a same-day appt. (It was a Saturday). The doctor mentioned lymphoma and arranged for a PET scan and a biopsy. Finally a month later we got the Dx, DLBCL, stage 4. No bone marrow involvement.

Two days after the biopsy we get a call, they want him as an inpatient to start chemo. We went in on a Thursday and finally on Monday they started chemo, R-EPOCH. At first they thought he had double hit lymphoma but when the DNA test came back it wasn't.

All this was at a Comprehensive Cancer Center near where we spend summers, excellent care. He was under the care of an attending, a fellow, a resident and an intern (It is also a teaching hospital).

He did well with the chemo, medically, no bad side effects other than fatigue and hair thinning. He was a pretty heavy guy (260) and has been losing weight throughout (now down to 220).

Our house up north is not built to spend winters in and we usually rent a place in the south for 4 months. His doctors told him that was OK and transferred his care to a doctor down here.

We saw the doctor here on 11/1 and expected that the next 5 rounds of chemo would be R-CHOP, outpatient. He was in the chair in the infusion center when his doc came in and told him, no, it would have to be 5 days inpatient again. He was very discouraged, he does NOT do well in hospitals mentally.

Finally he went in for the second round, it was a bit better than the first as the stay was shorter and he was able to sleep better (a big problem for him, esp. in hospital).

Now both his doctors here and up north are saying all the remaining rounds of chemo will be the same. Discouraging but I think he is getting used to the idea. I always room in with him at the hospital, he is hard of hearing and I can help him communicate as well as getting things he needs. At any rate we are a team, and I would never leave someone I love by themselves in a hospital with a cancer Dx hanging over their heads, if I could help it.

I am concerned because the lump in his groin is still there. Wondering if it could be a different type of cancer. The rest of the lumps disappeared with the first chemo.
 
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mrcove

New member
My story

I was diagnosed with stage 4, Non-Hodgkin's Lymphoma and my story is currently being shared at lymphomaclub.com where I was chosen as the December 2013 survivor of the month. I also have a book that recently came out- "Backbone: Battling Cancer in My Twenties."

Here is the story.

“Many of life’s failures are people who did not realize how close they were to success when they gave up.” That is the quote that kept Our December 2013 Lymphoma Survivor of the Month, Eric Hogan, motivated to fight and win two battles with Non-Hodgkin’s Lymphoma. Eric made the conscious decision not to let cancer stop him from living his life. Today, he is a 10 year survivor and employed as a nuclear medicine technologist. We are proud to share Eric’s inspiring story in his own words.


Eric Hogan, December 2013 Lymphoma Survivor of the Month

In September 2003, I was diagnosed with Stage 4, Non-Hodgkin’s Lymphoma. I had heard of lymphoma before but didn’t know much about it. My subtype was T-Cell Rich, Large Diffuse B-Cell. The main symptom I experienced, which lead to my diagnosis was extreme back pain.

One morning in late May of 2003, I woke up with a bad pain in my lower back. I found this odd because I never really experienced back pain before, but I blew it off as sleeping on the wrong side of the bed, so to speak. There were no injuries or falls that I could remember, and I hadn’t done any lifting, so I was at a loss.

On July 1, I have my first appointment related to my pain. The doctor asked me the common questions for back pain: “Have you lifted anything heavy or fallen down?” I indicated that I hadn’t. I’m sure I was just looked at as a routine back pain case so my doctor prescribed me Lodine, an anti-inflammatory drug, hoping that would solve the problem. In addition, he sent me to have some x-rays taken. I later received a letter from my doctor stating the x-rays showed I had scoliosis, yet there was no mention of how that related to my back pain. Since the pain was not getting better, I set up another appointment with my doctor, hoping that I could get more answers about my back.

He ordered more x-rays and gave me a script for physical therapy, neither of which helped. Finally I had an MRI and awaited the results.On Tuesday September 16, I got a call from my doctor around 5:00 p.m. By the tone of his voice, I could tell something was wrong. Sounding like he was nervous, he went on to state the MRI showed I had a tumor in the bone marrow of the lumbar spine. His next sentence is what scared me. He said he was referring me to a cancer specialist.

That was a pretty scary time, and I started writing a journal documenting my experience. It helped me cope with the situation as it was an outlet for all my feelings. Those journal entries ended up becoming my book, Backbone: Battling Cancer in My Twenties. I received 8 treatments of R-CHOP chemo and later received radiation therapy to my spine as well. I was going to college full time for nuclear medicine while all this was going on, and still managed to keep up with school without taking a leave. After radiation therapy, the tumors appeared to be gone.

After having a year of being cancer-free, I relapsed and received RICE chemo, followed with a bone marrow transplant. I spent three weeks in the hospital for the transplant and it was a pretty difficult experience to go through. The transplant was in 2006, which makes it 7 years being cancer free and 10 years of being a survivor.

My support system included family and friends, but for myself I just tried to act as “normal” as possible. What I mean by that, is that I continued to do the things that made me happy and temporarily forget about my diagnosis such as going to concerts, hanging out with friends, etc. I made the conscious decision not to let cancer stop me from living my life.

As far as advice, I think the best tip I have for getting through cancer and a bone marrow transplant is maintaining a positive outlook. During my bout with cancer, though it was a very difficult time and I often felt alone, there was one underlying thought that pushed me through. I knew I was going to survive and I knew I would get better. I believed with every ounce of my being that—if I let the cancer defeat me and succumbed to the sadness, deciding to accept the thought of death—I would not be here today to write this very paragraph.

Thomas Edison was quoted in 1877 as saying, “Many of life’s failures are people who did not realize how close they were to success when they gave up.” That is the attitude you must have in order to live the life you want and reach the goals that will ultimately fulfill your full potential. Most importantly, this was the attitude that got me through cancer treatments, trials, and hardships. I’ll be honest—sometimes it’s often hard to look at things positively, especially when everything seems to be against you. Yet if you try to live with the same outlook Edison had—that you will never give up—you will always achieve more than the people who gave up. That “more” might just be survival.

Since my bone marrow transplant, I have been great. I work as a nuclear medicine technologist in Oklahoma City and my book “Backbone: Battling Cancer in My Twenties” was released in September. As I mentioned above, the book was started as simply a journal of my thoughts at the time, but I always had the plan of releasing it to the public. It contains everything I went through at the time and if it is able to help just one person, then I will be more than happy. I think as journal is important to keep because sometimes it may be the only outlet for your feelings.

Book Facebook page http://bit.ly/erichogan
Amazon page http://bit.ly/amazonbackbone
Book website http://hogan.tateauthor.com
 
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Uni

New member
Another Newb

53yo male, no cancer history
-discovered lump on neck Oct 13
-mentioned to GP during medical
-GP sent me out to CT (inconclusive) then referred me to a surgeon
-surgeon did needle biopsy (inconclusive)
-then big biopsy (was so rushy rushy and was convinced to go out of network - grrr)
-told it was cancer, lymphoma (follicular when I called back and asked staff what type)
-then I got who I think is an excellent oncologist through top med school referral
-just completed staging with a full CT scan
-no bone marrow biopsy yet

multiple nodes in 4 quadrants, so stage 4, fairly aggressive 3a, asymptomatic
 

cward

New member
new to forum but not so new to my NHL

Hello,

I wanted to introduce myself. I am 59 years-old with a history of ABC-type DLBC transformed from an apparent nodal marginal zone lymphoma diagnosed in very late 2007. There was also high suspicion of having either Sjogren's and/or mixed connective tissue disorder at the time as well. I had R-CHOP x 6 with complete remission with perhaps 1-2 stable 1.0 cm nodes. I have been in remission since that time until now (since at least May of 2013).

I have since relapsed initially with nodal marginal zone lymphoma confirmed by excisional biopsy with two pathology consults in June/July 2013. However, approximately five months later, my latest CT/PET and core needle biopsy in early November 2013 confirmed relapsed diffuse large B cell lymphoma. My initial SUVs on the first CT/PET in June/July 2013 were 2.4 to 15.0. Now in early November 2013 they were 2.3 to 42.8 with resolution of some nodes from the previous test but progression of other areas.

In that interim, my treatment plan changed a couple of times prior to confirmed aggressive relapse. Initially it was thought I would have "Rituxan only" due to my unexplained, ongoing, probably paraneoplastic cytopenias (thrombocytopenia and neutropenia). However, in the middle of my third dose of Rituxan I had a severe, life-threatening anaphylactic reaction (I fell into unconscious, they could not feel a pulse or blood pressure initially; had to suction throat; I stopped breathing and code blue was called; although I became conscious after approximately five minutes (as I understood it). I stayed overnight for observation. I am still traumatized by that incident, no fault of anyone, just traumatized. They will not give me Rituxan anymore.

After that it was decided to just go with Bendamustine with supportive neulasta in hopes that my cytopenias would not interfere. However, I then got my confirmed relapsed DLBCL in November 2013 before any administration of Bendamustine.

Since relapsed with DLBCL, my treatment plan has changed to salvage ICE x 3, high-dose chemotherapy followed by SCT (as I understand it). I have just completed my second ICE therapy and my largest groin nodule has gone down substantially.

I have to say, this ICE has been very rough on me requiring hospitalizations approximately 5-6 days after each administration lasting 5-7 days each. I have had quite a bit of nausea and a lot of pain in my throat, mouth, etc. I also feel "out-of-it" most of the time. My counts do seem to go up considerably but then start to taper down before my next treatment. After treatment, my WBCs have gone down to 0.2-0.3, ANC 0.0, platelets 5-7,000 and so forth and my RBCs are low for the first time. I simply dread with all my heart the next ICE scheduled for late next week.

I was wondering if there were any other nodal (or other indolent) marginal zone lymphoma patients with similar experiences of cytopenias, transformations, etc. I am also anxious about SCT at my age of 59. I feel adrift and do not feel like the healthiest nor smartest wayfarer in the lot and I am very concerned whether I can weather this SCT storm or not. I have been a very big but silent fan of this forum for some time and I wanted to relay how much I appreciate everyone's time, it has been a blessing for all of us.

Thank you, cward
 

Kobalty

New member
Good day

I was just diagnosed Marginal Zone B cellular lymphoma.
But still don`t know which type. (As my spleen is ideal, I doubt that it`s nodal or extranodal)
I haven`t visited doctor yet, but as I walked through google - I have discovered that this is very rare desease, with very few patients and WHO has not approoved treatment plan for nodal marginal zone lymphomas.
I live in Tbilisi, Georgia..

Any suggestions, what to do or from where to begin?

Thanks a lot in advance
 

anjou

Active member
Hi Kobalty--
The beginning with this is really tough and waiting to know the plan is difficult WWW.lymphomation.org has a page for folks starting out with lymphoma and is a great resource. If you make a new post in the main NHL forum, you probably will get more answers.
 

blondemommy03

New member
My name is Heather and my Mom was diagnosed in Jan of 2008 with small cell B-cell CLL indolent NHL stage 4. The diagnosis came after almost 2 years of recurrent pneumonia and other issues, which were finally enough to point her PCP to HNL. She began R-CHOP in Jan 2009 and we celebrated partial remission from 2010-Summer 2013, when the nodes began growing again. I'll state here that I was not a big fan of her HEMONC doctor for a few reasons, but Mom just wasn't ready to go for a second opinion yet. After a few months of W&W, she finally put her on a maintenance dose of Rituxan every other month. In February 2014, Mom had a nasty bout with cellulitis and wound up hospitalized for 5 days with what ultimately was a staph infection. Her HEMONC doctor showed her incompetency during this hospital stay and it was enough to drive my Mom toward a second opinion, for which I am so grateful for. We switched doctors in March and learned that her PET scan revealed she was again at Stage 4 and pretty well covered in disease. It was obvious the last HEMONC allowed the disease to grow out of control, so now we are trying to reverse that and get into remission again.

On 4-7-14, she started a combination of Rituxan and Bendamustine on Day 1, followed by Rituxan only on Day 2. She will do this every 4 weeks, with weekly labs in between to monitor her counts. Her bone marrow biopsy showed she is still CD-20 positive, which we considered good since she tolerated the Rituxan very well in the past.

Since her first cycle started, we've definitely noticed the side effects being much more apparent and challenging than R-CHOP therapy in the past, so I decided joining this Forum would be a good idea as we can use all the support we can get!

We've managed to get the acid reflux under control with OTC meds and the nausea with Zofran, but she has very little energy and is still trying to work 5 days a week.

Her counts have dropped significantly each week since the first treatment. This week, platelets were down to 69, hemaglobin down to 8.8 and WBC down to 2.9. She has been feeling faint this week and is being sent back for more labs today.

Now that we have a HEMONC doctor who is very informative, I'm tracking and documenting everything and learning as much as I can about how to keep her comfortable and healthy as she fights with everything she has.

Some days I am strong and I'm always strong in front of her, but behind closed doors when I let it all sink it, fear takes hold and the tears come. I can't imagine life without my Mom and it breaks my heart to see her hurting.

--
Heather
Daughter of NHL patient, dx 1/08 stg IV, R-CHOP followed by remission 2010-Summer 2013, maintenance Rituxan through 12/2013, NHL back at stg IV in 3/2014. Back in treatment again and praying for complete remission before the end of this year. Beliving God for complete healing for my Momma!
 

BeccaBeeOly

New member
36 Year old mom of one...

Hi all,

I'm glad to have found this site. I think I am ready for support from other folks who are experiencing NHL firsthand.

My story (quick version): after a couple months of the doctors thinking I had bronchitis, and worsening symptoms (weird pains, weight loss, pain swallowing, etc), I FINALLY saw a doc who listened to what I was describing and ordered an xray. It showed a large, single tumor in my chest that was pushing my heart and lungs.

I was admitted to the hospital the next day (December 3, 2013), underwent a barage of tests, and was diagnosed with primary mediastinal b-cell lymphoma. I started inpatient R-CHOP the next day.

I finished 6 rounds of R-CHOP on March 25, 2014. I was set to start radiation, but my PET scan (and confirmation biopsy) showed I'd only had a partial response to the R-CHOP.

I just got into a phase 1/2 study of Bendamustine, Rituximab, Etopiside, and Carboplatin (TREC) for relapsed or refractory lymphoma patients. This is as an alternative to RICE. I start treatment next Wednesday, with 3 days of outpatient treatment.

The plan is to have 2 or 3 rounds of TREC, followed by stem cell transplant, and then radiation.

I am hopeful and positive. I have a 3 year old to fight for, and a great husband too! And, I have a lot left in my bucket list, so plan to keep fighting until we find something that works!

Becca
Diagnosed with PMBCL December 2013, age 36.
Completed 6 rounds of R-CHOP
More to come...
 

anjou

Active member
Welcome aboard
If you post below, even copy your intro into its own thread folks will be more likely to jump in, say hi and start sharing experiences

You will find lots of info here and at www.lymphomation.org
 

Westguy

New member
Another new guy

Hello to all.

Edited/deleted yesterday post.

I see this thread is not an intro. section. Better wait before story time.

Look forward to meeting all.

**(Moderators I am new--feel free to remove this. Will start a thread which is more appropriate.)
 
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Buckmark

New member
My name is Henry, and I was diagnosed with non-Hodgkins Burkitts lymphoma last September. I distinctly remember sitting at my desk on a Monday evening, and finding a lump on my chin when I simply rested my head in my hands. That lump was not on my chin earlier that Monday morning -- I would have remembered it when I was shaving. I am also a long-term survivor of HIV, so I immediately suspected lymphoma (though I was hoping for something less serious). After a quick trip to my primary doctor led me to an ENT doctor the next day, who ordered a CT scan, and then called me and said he needed to do a needle biopsy. Ruh roh -- that's when I knew it was likely cancer. My ENT doctor was also a surgeon, so when the needle biopsy came back positive, he was able to schedule surgery for a full biopsy in just 3 days.

The preliminary results of the biopsy initially showed I had DLBCL. I found an oncologist, who immediately ordered diagnostic tests, as well as referring me to a surgeon to have a port implanted. It took about 3 weeks the final pathology showed Burkitts. I had the usual diagnostic tests: PET scan, CT scan, lumbar puncture, bone marrow biopsy. I was lucky that neither my CNS nor my bone marrow was involved. I was stage IIIB - cancer in lymph nodes on each side of my chin (though only the right side was enlarged), plus one lymph node in my abdomen. I then started chemotherapy with the R-EPOCH regimen. I asked the doctor why she didn't want to use the R-CHOP regimen, and she stated that she felt EPOCH was more effective for Burkitts.

Chemo was a blast. On the R-EPOCH regimen you are hooked up to a pump continuously for 96 hours (I got a cool backpack to take home). Essentially it is a full week on chemo, then 2 weeks of rest. Fortunately, I was able to do this as an outpatient. I had the typical reaction to Rituxan the first time I received it: fever, and uncontrollable shaking / rigor. A dose of demerol fixed that, and I never had that reaction again in subsequent rounds of chemo. I went to the infusion center every day for a week: Monday for rituxan, followed by a combo of vincristine, etopiside, and doxorubicin that was refilled on Tuesday, Wednesday, and Thursday. Friday I received the cytoxan ( cyclophasphamide ). The following Monday, I received an injection of Neulasta. Also, on every Monday after chemo, I had a lumbar puncture to deliver methotrexate to my CNS as a prophylactic. A total of 7 lumbar punctures in all, if you count the initial diagnostic!

I had a few bumps along the way. After the 2nd cycle I developed a nasty staph infection on my leg (fortunately it was not MRSA). After the 4th cycle, my interim CT scan showed show shadowing on the lungs. I was rushed to a pulmonologist and had a bronchoscopy that day, which fortunately showed it was not the cancer that had spread, but rather that I likely had pneumonia (the specimens taken were not able to confirm this, unfortunately). At the start of my 6th and final cycle, I developed blood clots in my left arm, most likely due to my port. Now I'm on Coudmadin / Warfarin as blood thinners. They made my final lumbar a little nerve-wracking, but I made it through.

My final chemo was on March 17 with the lumbar puncture. My PET scan done on April 30th was as clean as a whistle -- NED. The week between my PET scan and my appointment to get the results on May 7th was the most anxious I've ever been in my life. Fortunately, I've had great help from my family, who flew here to be with me for each cycle (I live in Texas, they are on the east cost).

Now I am facing a decision on whether to do radiation. The radiation oncologist wants to do 17 treatments on each node, primarily because I had was she considers bulky nodal disease (the node on the right side of my chin was enlarged to about 5 cm). There's not a lot of information out there for radiation on Burkitts, but because I also have HIV, the radiation oncologist thinks I am at a high risk for recurrence. Fortunately, the information I have found here on these forums are helping me make an informed decision about radiation.

That about sums up my story for now. If anyone had read all of this, I am grateful.

Cheers,

Henry
 

Ninatoo

New member
A dubious sort of welcome to you Buckmark....dubious because nobody wants to belong here, but I am glad you found this forum because it will be a great comfort to you and a place of support.
 

nuke60

New member
Hi I'm new guy Steve 54
just been diagnosed with follicular NHL grade 2 stage 4 with bone marrow positive, with 5 plus bulky nodes
Dr says watch and wait, I have a good attitude about it but it's scary.
I hope to find a thread on this
 

anjou

Active member
Hi--
Welcome to our corner of the net-- there are many many posts discussing watch and wait down in the NHL section. The search feature at the top can be helpful finding them. I would use the advanced search feature and maybe put it so watch and wait came up in the post title. You may miss some but should bring some up

This link might be helpful http://www.lymphomation.org/watchfulwaiting.htm
 

teewin

New member
GF has PMBL

Just posted a thread. Thought i introduce my self here.

My GF was dx with PMBL stage 2a late MAy 2014, went to dr coz she had SVC.
Dr found two masses in her chest 6.4x4.8x7.5 and 5.6x2.3x3.3, no bone marrow involvement.
We started DA R EPOCH early June 14. Her SVC symptom diappeared after the first round.
Now she is about to start the 5th round.

The result from a CT scan after 4th round is one 5.2x1.6 mass left. Not exactly what we were hoping but it least it's smaller.

So now our dr. is likely to give her 4 more rounds, so it's total 8 rounds.
I am wondering should we ask for a PET/CT scan after the 6th round?
 

redryder

New member
Mantle Cell Lymphoma (MCL)

First, my heartfelt sympathy for those who’ve posted hereon with horrendous diagnosis experiences. By contrast, my diagnosis was swift and compassionate. My wife and my PCP pestered me for years to get a colonoscopy, but my hemoccult tests were all negative for years, and I thought I was at extremely low risk for colon cancer, so I declined the pleasure. After all, I hadn’t smoked for 34 years, had no family history of any type of cancer, and my lifestyle was exceptionally healthy, stress-wise, activity-wise, and diet-wise. Then, the summer I turned 69 (2010), my PCP claimed to find a little rectal blood when she did my annual exam, so to shut them both up, I grudgingly agreed to undergo a colonoscopy in October 2010. When I awoke from the anesthesia, the gastroenterologist, Dr. Chad Morse (for whom Ill be eternally grateful!), said he found no polyps, but did see some polypoid tissue folds that looked suspicious, so he took some tissue samples for biopsy. The next day, October 13th, at 10:15 am, he called me and said he had bad news: he got the pathology report on the polypoid folds, and it showed they were cancerous, a particular type of cancer known as Mantle Cell Lymphoma (MCL), an aggressive type of lymphoma, which is treated by bone marrow transplant, and can’t be just cut out. Survival after diagnosis is generally @ 3-4 years. Dr. Morse said I’d be getting a call from the Mountain States Tumor Institute (MSTI) there in Boise, and the new patient coordinator would arrange for me to come in for treatment. If I don’t hear from them by tomorrow morning, he said, call him back. Dr. Morse said if I’d like, he would like to sit down with me tomorrow sometime after 11:30, and explain all this face-to-face and try to answer my questions; he said I needed to bring someone with me, preferably my wife, so that more than one pair of ears would hear the information. Mildly stunned, I readily agreed to come in; about 2 hours later, Dr. Morse’s secretary called me and said that he could see me at 12:00 on October 14. She also told me he wanted to schedule me for a couple of tests: a PET and CT for both abdomen and pelvis, and a nuclear medicine MUGA test. With my ready assent, she got the PET scheduled for Friday, and the MUGA for the following Monday. Then, at 3:45, I got a call from the new patient coordinator at MSTI, making an October 28 appointment for me with Dr. Ben Bridges, a young oncologist there at the MSTI office in St. Luke’s Hospital in Meridian, Idaho. As you can imagine, I researched the hell out of MCL on the internet that evening and night. On October 14, I met with Dr. Morse, and we talked for over an hour; he answered all my questions directly and without evasion or hesitation. He told me that: Dr. Bridges would probably want to do a BMB; prompt aggressive chemotherapy will likely be prescribed; it was highly unlikely — approaching impossibility — that the biopsy is mistaken, as MCL cells have a rare and typical appearance (he said the pathologist called him as soon as he discovered them); didn’t believe that my tissue samples could have been mixed up with someone else’s, as it’s an excellent pathology lab; my prognosis, he felt, was excellent, since we appear to be catching it early, rather than looking for it due to symptoms, and since he believes that MSTI is an excellent clinic, equal to the one at Ann Arbor. When I met with Dr. Bridges, we discussed the scans, which revealed no outstanding tumors in other organs, but there were areas of higher activity than there should be in several of my lymph nodes. His conclusion: MCL that needs to be treated by chemotherapy and — perhaps — by a bone marrow transplant at the end of six sessions of R-CHOP, the first scheduled for November 2. Power port installed on October 27, BMB on October 29 (oh, my, did that ever hurt…..!) Couldn’t tell at the time if it was indolent or aggressive, but confirmed that it was probably at Stage 3. At that point, I wasn’t scared, just a little apprehensive. I had accepted that this was really happening to me, even though I was totally asymptomatic (I NEVER had any of the classic symptoms of NHL - no night sweats, no fevers, no sudden weight loss, no itching), but it periodically felt all wrong. (I didn’t — and don’t — feel it’s unfair, because I don’t believe that things are supposed to be fair….they just are what they are.) After I got over my initial guilt and shame for having cancer (because I MUST have done something wrong to get this, right? ;), I really haven’t gotten angry, or resentful, or asked “Why me?” Instead, “Why not me?” I’ve lived a good and long life, been “blessed” with a lot of good things. I’ve kinda sorta come to grips with my lymphoma…… I think. I can’t recall the stages (denial, anger, bargaining, depression, resignation, and acceptance?), but I got thru denial almost immediately, and very quickly, and I don’t know that I even tipped my hat to anger: I’m somewhat of a fatalist, or at least, I believe that things just happen, and that life is neither fair nor unfair, it just is. Bad things happen to good people (and I think I’m a good people) just because they do. I’m a little stunned but not overwhelmed, sad but not grieving, initially envious of others (younger, apparently healthy, oblivious) but immediately following that mild surge of wistful envy is the backwash of acknowledgment that I’ve much to be thankful for, and I’ve had a relatively untroubled, peaceful, and rich life. BMB was negative, and the beta2 micro globulin test was normal, so it appeared I was more at Stage 2, not Stage 3. Infusions went well and uneventfully; side effects the normal ones, but mild (because of my low tumor burden?)….. nausea, low appetite, constipation, a little lingering neuropathy (to this day) on the sole and middle toes of right foot, and on November 17, when I started to lose my hair, I had my wife take our poodle clippers and buzz cut it! On December 10, I learned that the stem cell panel there at MSTI had agreed w/my oncologist that I’m a good candidate for SCT, even though I’m older than the recommended cutoff age of 65. Dr. Bridges also wants me to take another drug, Cytarabine, which he believes will improve my chances of entering remission, I agreed, and had two treatments with it. Feb 15, 2011 - in remission! Last chemo session on March 29; CT scan April 2011; go forth and live my life, get checked every 6 months or so. I decided against maintenance doses of rituxan, due to the very rare but devastating possible side effect of a brain infection (Progressive Multifocal Leukoencephalopathy - PML). Fast forward to August 2014, retired, moved, and enjoying life….I had a small tumor removed from my lower left inner eyelid…. biopsy revealed that it was MCL… Oooops! Shortly thereafter, my lingual tonsils, which had enlarged 4x and were affecting my voice and swallowing, were also biopsied and shown to be positive for MCL. Subsequent PET scan and CT scan, plus BMB and colonoscopy, revealed that I’m currently at Stage 3AE, with no significant involvement in BM, colon, or anywhere else discernible at the moment…..Oh, well…… this time I’m undergoing bendamustine/rituxan infusions (6x, every 3 weeks), started on Sep 26, 2014….. hoping for another 4 yr (or so) remission. B/R side effects (for me, at least) are similar to R-CHOP, but much milder. My current MSTI oncologist wants to keep me alive until I die from something else… :) … Each day is a gift, and I appreciate every one …… I’m unbelievably lucky that my diagnosis and treatment was so much smoother, quicker, and more compassionate than what many others have reported here, and my heart goes out to each of them.…. Namaste.
 

jerrymc777

New member
Long Term RCHOP effects

Hi:

I was dx Nov 2013 large bcell NHL. With a compromised immune system, NHL is common. (I'm a fighter so this wasn't going to crush me.)
It started with back pain Sept. 2013.
Started RCHOP treatment Nov. 2013 through Apr. 2014. (6 sessions)
2 PetScans later I am told I am in remission, but my body says otherwise.
I still have pain in my groin, lymphnodes, chest, very low back pelvic area, hips, joints, bones, and neuropathy in hands and feet, foggy brain, and always tired. (The chest pain started right after the first chemo.)

I cancelled my hematologist appt this week because he hasn't done any more tests and just tells me to follow up with my palliative care Dr for the morphine, ritilan, ibuprofen, and vicodin. I was on some narcolepsy med before for energy, but Dr took me off cause my creatine kinase levels skyrocketed over 2,400. I asked if that's a heart problem along with the chest pain, and was told no because my EKG was fine.

I work out about 4-5 times a week and am very muscular, but cannot even leave the house until the pain meds kick in. (no, I do not lift heavy weights)

I am soooo tired of doctors shuffling me off to another dept and just referring me back to "well, the petscan shows you're fine..."

Is this normal for post RCHOP therapy?

Thanks for your time.
 
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