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Any help for a caregiver for a newly diagnosed Stage IV NH Follicular Lymphoma husband?

toolmantodd's picture
toolmantodd
Posts: 3
Joined: Mar 2017

My husband was diagnosed with Non-Hodgkins Stage IV E Follicular Lymphoma Grade 3A almost a month ago.  He had his first chemo treatment of R-CHOP on Friday, March 24th & has not been showing any signs of side effects.  We were both freaked out when his infectious disease dr told us one of the pathology reports came back as this cancer.  After crying for a few hours, I went online to research & too many contradictions & misinformation to know anymore than I did when we were given the news!!  The oncologist referred couldn't get him in for a week, and I had so many questions.  I thought I should research sites for us to find support, and came across Cancer Treatment Centers of America who not only chatted online, but called me....and a week ago Monday has us in for tests & treatment.  Although his PET scan was ordered nearly 3 weeks ago & have yet to get a call to schedule it, the CTCA got it done 4 hours after we arrived.  The following morning, the dr gave us the stage & treatment plan....and I cried more....especially after his first oncologist told us stage I without running any tests.  False hope is worse than no hope as far as I am concerned.  I have tried going onto the chatroom here, and the people are great, but nobody with this same situation.  I tried private messaging a woman I saw had survived this, but that was a few days ago & haven't heard back from her.  It would be great to hear from someone, anyone who has battled this or battling it now.  There isn't a second goes by I don't wish I could take it out of him & place it in me!!!!  My husband is terrible at talking things out so I feel very alone in this.  We had dinner tonight & stopped by a bar he used to bartend at.  We ran into a mutual friend who was diagnosed last August with Pancreatic Cancer.  This guy hugged me & told me I had no idea what it was like to have cancer & I should be more concerned about my husband's feelings than my own.  Although I am, it has me so depressed right now I can't even think about sleeping.  I would sure love to hear from anyone who knows anything about his cancer or what I might be going through as his caregiver!!  Thanks!!!!

po18guy
Posts: 1011
Joined: Nov 2011

Basics: Many people live long and reasonably healthy lives with follicular lymphoma. It is a slow-growing lymphoma, and is considered to be a chronic, manageable illness. One of the primary treatments is watch and wait, or "active surveillance." Research is ongoing and advancements are being made on a regular basis. R-CHOP is the gold standard of treatment and very few side effects are noticed at the start, other than possible allergic reactions to the "R" (Rituxan). Cumulative side effects will be greater, but each individual reacts differently.

Stage IV? Don't worry about it. Lymphoma staging is unlike all other cancers, with the stage serving primarily to direct therapy. Lymphoma remains treatable at all stages, and tumors often melt away like cie cubes. I have been stage IV at least twice, and have had about 100 tumors total, plus bone marrow and small intestine involvement. And, this is regarding two rare and slightly different forms of aggressive T-Cell Lymphomas for which there is no standard treatment. 

The point is not to panic when hearing the word "CANCER!!!" as it is not the threat that it used to be. Many elderly people end their lives with cancers they never even knew about, as they produced no symptoms.  Follicular can be a challenge, but most patients do fairly well with it.

toolmantodd's picture
toolmantodd
Posts: 3
Joined: Mar 2017

Your insight is absolutely helpful, and I thank you for taking the time to respond!!  Mark's is not so slow growing & they are baffled because of how aggressive it has become.  About 5 weeks ago, I had to call 911 to take him to emergency as he could not breathe at all.  They did an emergency trache that he still has until they can be certain he will not need that backup plan to get oxygen into his lungs.

po18guy
Posts: 1011
Joined: Nov 2011

He might have had this for years witout knowing it - that is a possibility with follicular. Another possibility is that it could be transforming into Diffuse Large B-Cell Lymphoma, which is an aggessive type. That can be more challenging, depending upon any mutations that tumor cells have picked up in that transformation. However, any and all B-Cell Lymphomas are far better known than the T-Cell varieties

I would consider having his case and most recent biopsy samples evaluated by a pathology lab at a major National Cancer  Institute designated cancer center, or ateaching/university hospital. Pathology is everything in lymphoma, and many mistakes in disagnosis have been made. There are certain lympphomas that have the characterisitics of two different types, further confusing pathology.

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

toolmantodd

Maybe I can help a little. In Dec 2014 I had a standard appt with my primary Dr. In conversation I mentioned some problems with bowel movments. She checked my abdomen and found a mass. Immediately orders a CAT scan plus a thyroid ultrasound because my thryoid was off. (I am on meds for thyroid but was tired a lot.) When they did the CAT scan the noticed I had fluid around the lung, pluerisy. Had that drained and a biopsy on the mass. Biopsy came back cancer and I was sent to the oncology dept. Fluid came back in lung.  Beginning of January had PET scan, drain put in for pluerisy so we could drain it at home bone marrow biopsy and sent to Rush hospital for a second opinion. 

I was told that even though follicular is usually slow growing the fact that it had caused the pluerisy and was supect for why my thyroid tests results were high. That is why they were going to treat my lypmhoma as agressive. First chemo was Jan 13, about 4 weeks after I had the appt with my primary Dr. 

To be honest, when I was first told I had cancer I was upset and cried a little. Then, since I am an information junkie, I started doing my own research. I learned real quick to ignore any posting that was more than 2 years old. I know my husband and family were worried but my husband is not one to talk about his feelings. To this day if I bring up anything beyond upcoming appts he will change the subject. He comes from a family that never talked about feelings. Fortunately my kids (who no longer live at home), other family & friends did talk about it. I got in the habit of emailing "news letters" to them and co-workers  my treatment schedule, how I was feeling and whataever was on my mind. The newletter was slightly difference for each audience.

I think it was after my second cycle of R-Chop I found this discussion board.

I also joined another discussion board called Cancer Care (http://www.cancercare.org) . The support groups are led by a oncology social worker and are grouped by type of cancer. The people in these groups are cancer patients and family members. The idea is not so much to talk about Drs and treatments but about feelings and emotions. Also to vent about famly members, medical staff, etc. AND it is free. Personally I think it was unfair for that person tell you to be more concerned about your husband's feelings than your own. The feelings of both of you are important. Plus how can you help your husband if you all of your feelings are bottled up inside you. Even if you have a close friend or family member to talk to there is something nice about these kind of sessions with people who don't know you or your family. 

Maureensteg1
Posts: 3
Joined: May 2017

Hi there! I know this thread is over a month old but I'm in the same boat. My husband was diagnosed 3/30/17 with stage IV NHFL & started RCHOP on 4/17/17. It is on both sides of the abdomen (right side from liver to groin), left side but not as prominent, in his spleen, & bone marrow. He has just completed round 2 and hasn't been doing well. He just got discharged from a week in the hospital with a low grade fever. They released him saying there was no infection but a symptom of the lymphom. He is also now having the drenching night sweats that he didn't have before . Has anyone else experienced worsening symptoms after two rounds of treatment? We have another PET scan next week & are praying it hasn't gotten more aggressive.

Sable1416
Posts: 8
Joined: Apr 2017

Just curious  - how was this found? What led your husband to seek care?  Thanks

Maureensteg1
Posts: 3
Joined: May 2017

He went for his yearly physical & the doctor sent him for CT Scan. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3329
Joined: May 2012

Maureen,

"Night Sweats" in Lymphoma are part of what are known as "B-Symptoms."  B-Symptoms are ordinarily taken as indicatave of more aggressive disease than the alternative, "A Symptoms," which really means nothing more than "the absence of B-Symptoms."  B-Symptoms are: Night sweats, rapid weight loss, and  profound weakness.

It is odd to begin night sweats well into chemo, but I guess anything is possible.  He may well have what is called "Flu-like Syndrome."  I had Flu-like Syndrome for 5 months.  Numerous chemos cause this, which consists of low-grade fever, extreme muscle pain, and feeling like you have the flu when you don't.  I had to take Loritab for the whole time, the pain was so bad.

 His PET next week will indicate whether or not the drugs are beginning to work. I hope for the best, and hope you share what the PET reveals. Usually, this stuff is fixable. IF he needs to switch drugs, then any good hematologist will have him switch drugs as necessary,

max

http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

 

.

Maureensteg1
Posts: 3
Joined: May 2017

Thank you for the link and the information!

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

After reading your post which included information about CancerCare.org – I almost immediately sought it out and signed up.  I found the registration process to be surprisingly interesting and thus am really looking forward to their summer 2017 Online Support Group about pancreatic cancer (as some of you know, Mac was diagnosed with a rare form of pancan just 4 months after my SCT.)  Anyway, maybe this is a bit weird, but I thought our Lymphoma group might find it interesting to read THEIR a sampling of their registration questions…I included MY answers.  Thanks, Lindary, for bringing it up!!!  It’s long and I still haven’t figured out how to make paragraphs just one space apart instead of 3 or 5…oh well.  Here ‘tis:

 

 

 

Please tell us about your current situation, including your loved one’s treatment.

 

Mac (his nickname) has the quite rare acinar cell carcinoma of the pancreas.  Initial biopsy findings suggested a more typical kind of Pancan but our oncologist felt there was more to it and had Cedars Sinai confirm the acinar diagnosis he suspected.  He began Folfirinox 9 days after diagnosis at City of Hope and tomorrow when the bag is disconnected (and his "man purse" leaves his shoulder) he will have completed 14 cycles.  If all continues to go well (and he's handling it exceptionally) he's currently scheduled for 3 more.  Neuropathy is, of course, the biggest potential problem but, fortunately, still remains "potential".  No nausea or vomiting, no pain, good appetite.  Importantly he has just recently taken on a new determination  to be disciplined about exercise, water-drinking, med-taking, trying hard to take on a the “my nagging part” lot of his care-giving.  No mets to any organs, only to lymph nodes both local and distant, thus unresectable.  When folfirinox is no longer an option and we've achieved the maximum shrinkage we're going to get, he'll then go on maintenance which I think just lowers or eliminates the Oxilaplatin with a possible change in the Irinotecan.  It will continue to be an every-two-week event.

 

 

 

How are you feeling and how are you coping at this time?

 

I get sad /scared and go cry in the shower.  Am frustrated that acinar especially is so little studied, has so few clinical trials, and that genetic sequencing, detailed molecular analysis, etc (precision medicine) doesn't seem to be a route that our doc thinks would be of much help. Pretty sure there's not enough biopsied-tumor to study anyway, but can't they go back in and get more?  Virtually NO pancreatic cancer clinical trial will include the acinar sub-type and I've spoken to several organizations and called Johns Hopkins about their trial on pancreatic maintenance chemo – but no dice.  In trying to find a doc who's actually treated more than a handful of this type of pancan, a doctor at Fred Hutchinson was recommended to me and said "oh, I've probably treated about the same as most".  

 

We talk a lot, not specifically about death but about what a wonderful life we've had together for 50 years.  (I'm 67, he's 72 and we met back in the dark ages as employees at Yellowstone Nat'l Park).  We cry together from time to time and, thank gawd, he's always been a willing talker about emotions and fears and, well, he's just nicely introspective.  A side note (and part of my sometimes-difficult-to-cope-with physical reality) is that I had a stem cell transplant in July of '16 with all the huge time and emotional commitment that takes from both the patient and the caregiver (Folicular NHL came back after 5 years of remittance).  So I was just 4 months post SCT when he was diagnosed.  Pretty angry, both of us - when do we get a break?  And lord knows, he's gone through some other scary stuff...too much for a healthy active guy (triple bi-pass in 2006, Prostate Cancer in 2010 and SIH in 2015.)  Still seems so surreal. 

 

 

 

Are friends or family members helping you through this time?

 

Our son (a DPT in San Francisco) flies down to our So. Cal. area at least once a month and his visits are so welcome and so valuable.  He's a good critical thinker and adds so very much emotional support.  I'd say there's not a week that's gone by when he hasn't called at least once a day.  One of the best things he had to say last week was about the difference between motivation and discipline...that viewpoint is quite well summarized at http://www.wisdomination.com/screw-motivation-what-you-need-is-discipline/ 

 

And, of course, everyone always says, "please let us know if we can help".  But a few are the sort that just get up on the wagon and help pitch hay - they don't need to be asked.  We are not religious but have dozens of people of all faiths praying for us...Christians, Muslims, Budhists and even a Unitarian.

 

 

 

Have you ever been in a support group previously?  If so, please tell us about your experience.I guess not a support group, per se.  But the Lymphoma discussion group on Cancer Survivor Network has been great both for my situation and even with support regarding Mac.  The Pancreatic cancer discussion group on that same forum...well, not so much. 

Best to all.  Oh, and I've now officially decided that it's spooky how much Max and Po look like each other.

Smallso29's picture
Smallso29
Posts: 3
Joined: May 2017

I have been displaying classic B symptoms of Non-Hodgkin's Lymphoma for the past 2 years, but I do not have health insurance and cannot afford to get a CT scan. Does anyone know of a cheaper way of getting one done? 

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

Paella,

I know you will get a lot of emotional support from the Cancer Care group. The nicest things about it is that the only people who see what you wrote are the ones in your group for that session.  Best wishes for you & your husband. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

back in Apri, thank you.

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

I hope it find as helpful as I did. 

Jgapen
Posts: 2
Joined: Aug 2017

My husband and I began our cancer journeys when he was diagnosed with throat cancer and then 18 mo's later liver cancer..... Then 18 mo's later I was diagnosed with Stage IV-B Follicular Lymphoma (NH) in May '14 after having a perfect physical in Dec '13.  In April of '14 I had gone to a doctor that prescribes bio-identical hormone replacement therapy.   She did "blood work" and called me the next morn to let me know she couldn't help me as she believed I had lymphoma.  She referred me to an excellent hematology oncologist and after MANY test and a bone marrow biopsy she gave me the above diagnosis.  All lymphs were involved as was 92% of my bone marrow.  The diagnosis was on a Fri! I had my port put in on the following Mon and began R-Chop & Rituxan that Wed.  After finishing the chop and 2 addt'l yrs of Rituxan in mid Oct '16 my lymph nodes got really angry again in Nov '16 (less than a month) and a biopsy confirmed the same cancer was back.   I began a new chemo (Treanda along with Gazyva) in mid Dec.  I finished the chemo in early May '17 and am back in remission and just doing the Gazyva maintenance every 2 months for 2 yrs.   We will go from here and see where this takes us!  My husband is doing great!

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

What a trip you have been on. I was diagnosed Dec'14 with follicular non-hodgkins lymphoma. The lymphoma cause my to have pleurisy in my right lung. I ended up with a catheter to drain the fluids until the chemo got things working again. Did 6 cycles of R-chop. About 2 weeks after the first one I ended up with a perforated bowel when the enlarged node shrunk and tore a hole in the bowel. After that last treatment the scans showed there was still some activity so I did 3 cycles of RICE.  

The next step was going to be stem cell in '16 but after a few pauses the Drs decided to cancel that. I have been doing the Rituxan maintenance and will have the final treatment in Oct. Like you  am wondering if this will be it or ehat is next. 

 

 

Jgapen
Posts: 2
Joined: Aug 2017

YOU too have been though a lot!  Praying the Rituxan nails in the remission!  Please keep me updated!

lindary's picture
lindary
Posts: 664
Joined: Mar 2015

At the time it is just one thing to get over after another. Looking back at it all I can think is "how did I do it?". That is true of everyone of us. No matter what the reasons or motivations are to push forward it is a road that none of us planned for. If we still have a sense of humor, so much the better.

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