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Indolent Mantle Cell Lymphoma

Nellie4579's picture
Nellie4579
Posts: 16
Joined: Dec 2017

Hi everyone,

I was a healthy 57 year old before my diagnosis other than having Rheumatoid Arthritis.  I was diagnosed with stage lV Indolent Mantle Cell Lymphoma in September 2017. It was quite a shock as i thought my swollen thyroid might be due to Graves disease, thats what Dr. Google was telling me anyway.

I started RCHOP Nov. 7th That first one was awful! I had mouth sores and the worst headache of my life also a strange stabbing needle pain in my jaw. The second treatment was a walk in the park which made me over confident for the next treatment which wiped me out. My glands are more affected then my lymph nodes and the swelling is almost gone thank goodness!

I was taking Methotrexate and Hydroxychloriquine to manage my Arthritis. My Dr. told me Methotrexate could cause Lymphoma but assured me it most likley wouldn't happen. And here i am three and a half years later fighting Lymphoma.

My Oncologist took me off the Metho. and Hydro. because the Rituxan is also used for Rheumatoid  Arthritis. Now i am terrified to start taking them again after i am finished whith my chemo treatment. I am looking into alternative ways to manage my arthritis. I have an appointment with a Homopatic Practitioner today, Hopfully he can help. My last treatment is Feb. 20th so i hope to have a plan to stay off the drugs by then.

I know Indolent Mantle Cell Lymphoma is more like a chronic illness, you never really completely get rid of it, so i feel as if i am doomed if i go back on the RA drugs.

po18guy
Posts: 1011
Joined: Nov 2011

But, until a causal relationship is established, I would not fear controlling the mantle cell. For RA, there are new, biologic, non-Chemotherapy drugs as well as clinical trials. There are many "dots" in our health lives, and we err if we automatically connect them, as they may be totally unrelated. You are in the prime age for lymphoma to arrive in even the healthiest of individuals. I refer to it as the "retirement" or "Social Security" cancer. And Google? It's not a doctor, it's a mortician.

For treating RA, there are many options, including the new generaiton of biologic (non-chemo) drugs. The entire problem with RA and all autoimmune diseases is that they are the product of an overactive immune system. To stop them, the immune system must be suppressed. This opens the door to all sorts of things, from infection to cancer. That is the 'cost of living' once our bodies turn against us.

From the MATO Clinic website:

Biologic agents. Also known as biologic response modifiers, this newer class of DMARDs includes abatacept (Orencia), adalimumab (Humira), anakinra (Kineret), certolizumab (Cimzia), etanercept (Enbrel), golimumab (Simponi), infliximab (Remicade), rituximab (Rituxan), tocilizumab (Actemra) and tofacitinib (Xeljanz).

If doctor does not research and offer the new generation of drugs, or a clinical trial, frankly, I would seek another doctor. 

 

yesyes2
Posts: 590
Joined: Jul 2009

Hi Po,

All Rhuemotologists will offer the new drugs.  But they all have a lymphoma warnings.  One of the drugs specifically is known to cause my rare type of lymphoma.  Another was blamed for my cancer by one of the developers of the drug.  Others are also showing increases of other cancers such as lung cancer.  Most of these drugs are known cancer causers and no reputable hemo/onc will give an okay to a patient who has recently had a lymphoma in my opinion.  I have talked with some of the best, as I know you have too.  Not everyone has as philosophical an outlook on life and living with diseases as you do.  We all have to travel through this the best we can.  All RA drugs are just plan dangerouse.  But once you are given a diagnosis of RA it's all about more and more drugs and more drugs to counter the after effects.  I speak from 32 years of experience.  I appreciate your opinions and knowledge on lymphoma, specifically T cell.  And I hope you respect mine on RA.

illead's picture
illead
Posts: 846
Joined: Aug 2012

My husband also has MCL, diagnosed in '11 and has relapsed 3 times (the last 2 being since May).  I can't really help you with RA, I think Po gave you very good advice and he is very knowledgeable.  Concerning your MCL, my advice to you is to see an expert in MCL.  It is so rare that most oncologists have never treated it much less heard of it, so you really need to see someone who knows MCL.  We took the step this year of seeing Dr. Michael Wang at MD Anderson in Houston.  I and many MCL patients consider him to be the best there is with MCL and he is passionate to find a cure.  However, depending on your location it may not be possible for you but if you are at all able I strongly suggest you try to see him.  We live in CA and have been to Houston 4 times since May and do not regret it one bit.  MD Anderson is an incredible place.  There are other very good MCL experts though and if you want to share your location, I can give you some other options.  I am also sending a link to an interview at the ASH conference (American Society of Hemotology) with Dr. Wang.  He has an accent and talks fast but you will be encouraged to hear and see his enthusiasm and passion for all B-cell lymphomas but mostly for Mantle Cell.  He is a wonderful man and doctor and he truly cares for his patients as you will see in this video.  Please feel free to ask me any questions. 

Becky

https://www.patientpower.info/video/promising-mantle-cell-lymphoma-treatment-updates-from-ash

Nellie4579's picture
Nellie4579
Posts: 16
Joined: Dec 2017

Thank you for the link to Dr. Wang, i will talk to my oncologist about him. I am in Ohio an hour south of Clevland. My Oncologist is 3 years out of her residency and in practice with her father. I think i am getting the benefit of his experience and her up to date training.

yesyes2
Posts: 590
Joined: Jul 2009

Hi Nellie,

Sorry you are facing some tough decissions regarding your RA treatment.  I am also facing decissions at this time.  I was on both Methotrexate and Humira when I was diagnosed in December 2007 with a rare and aggressive B cell lymphoma.  The lymphoma was believed then and still is believed to be caused by the Humira, one of the new disease modifing medications that Po mentioned above.  I too was removed from all RA med and treated with rituxin.  Within a year and a half I relapsed and was then given RCHOP.  I am still in remission, and have been receiving rituxin 4 times a year, 2 every 6 months, for my RA.  It works great for me but has totally ruined my immune system.  I am not storing any antibodies to any vaccinations.  Doctors now are afraid to keep me on the drug and have very little to offer me.  And that is because all the new DMARD drugs have strong cancer warnings.  So we are damed if we do and damed if we don't.  Po, if you question a hemotologist who is familiar with RA they will tell you these new drugs have a cause and effect.   And I refuse to play with these drugs again.  For me methotraxate, which I was on for 12 years may be the lessor of any evils. 

Sorry I can't give you an easy solution Nellie.  If you wish to email me via this site please do.  I am seeing a few more specialists in the next 3 weeks and am hoping for some better answers.  Or finding an RA doctor who will give me Rituxin.

Nellie4579's picture
Nellie4579
Posts: 16
Joined: Dec 2017

Thanks for commenting yesyes2, glad to hear you are in remission. I have always been one who only takes medication as a last resort and ofcourse cancer made drugs necessary. i know there can be terrible side effects but the trade off is the chance of a longer life. With RA meds i am willing to at least try almost any alternative but if i have to i will consider another drug.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Every drug ever FDA approved carries warnings.  Asprin can ulcerate the stomach, Advil can kill the liver (like all other NSAIDs).  And so forth forever and forever.

These RA drugs may have some tenuous, weak link to lymphoma, but they are so new, that sound, long term studies cannot yet have sound, long term data on this.  Two of my drugs in the extremely popular R-ABVD have substantial risks:  Bleomycin causes lung toxicity in 10-15% of all users.  It causes fibrosis and death in 2%. It caused fibrosis and 25% loss of lung volume in ME.  But I thank God for Bleomycin every day.  I would rather live with 75% lung volumn than die with 100% lung volumn.   Bleomycin remains a mainstay in HL cancer, testicular, and many others, and more popular than ever.  Adriamycin ("Rubex", nickname "Red Death") is a key drug in ABVD, CHOP, EPOCH, and most breast cancer combinations, as well as a dozen other cancers.  It causes congestive heart failure in 1-2% of all users.  But it is extremely popular.

Most new blood thinners and stroke meds state on the TV ads that hemmorage and death are possibilities. Not delayed -- immediatley !

So, the risks from the new RA drugs is, currently, slight and little understood.  EVERY drug has a disclaimer on its data sheet that reads "This drug is perscribed by your doctor because its likely benefits outweigh potential side-effects."  EVERY drug is a probabilistic choice -- doctors and patients hoping for the 90% likelihood of benefit, verses the comparatively tiny chance of serious or life-threatening developments. And the scenario you describe: beginning the RA drug, and three years later having Lymphoma in no way constitutes proof of a causal link.

I was watching some idiotic commercial this weekend; it showed an SUV plow through a storefront and wipe out counter space for some reason. 

Underneath, in fine print, it said, "This is a Commercial. DO not do this with your own car."   

We are so soaked in lawyer-think that common sense no is no longer common, and probably not even legal anymore.

max

Nellie4579's picture
Nellie4579
Posts: 16
Joined: Dec 2017

Thank you all for your comments and for all of the info. I have 3 more treatments to focus on and by the time thats over i'll have a plan for my RA.

yesyes2
Posts: 590
Joined: Jul 2009

Hi Nellie,

I just met with a well respected RA specialist.  We discussed RA medications and people with lymphoma.  For me Rituxin is working and she is keeping me on it.  She stated that once an RA patient has lymphoma they can never take a TNA.  The risks of returning lymphoma is too great.  Several of the TNA drugs are over 25 years in use so there is long term studies available.

Anyway where I am going with this is if you do not find an alternative to standard RA medications you can go back to Rituxin which does not have a cancer connection.  The RA dosing for the drug is only 4 infusions a year, 2 every 6 months.  So please keep thsat in mind if you would.

Hoping for the very best for you,

Leslie

Nellie4579's picture
Nellie4579
Posts: 16
Joined: Dec 2017

Thank you so much for this information i will definitely consider Rituxen if it becomes necessary. I wish you all the best on your health journey. 

illead's picture
illead
Posts: 846
Joined: Aug 2012

Just wanted to add that also Weill Cornell in NY has some good MCL specialists, I know of Dr Leonard and others, just can't remember their names.  It sounds like you are happy with your oncologist though, but just thought I would mention that.  You have some difficult extenuating problems, I wish the best for you, hang in there.

Becky

Hilkei
Posts: 5
Joined: Jan 2018

Here is what had happened to me ... i was diagnosed in December 2013 with Mangle Cell Lymphoma based on a biopsy called for from enlarged calcificactions that had been “kept under watch” in my routine mammogram.

I was put on R-CHOP 8 sessions in 6 months With Rituxan by itself every other month for the following two years.  Around the 2nd R-CHOP treatment my hair was pretty much gone, what ever was left I had shaved and started wearing wigs.  I didn’t color my hair before or after.  When my hair came back it was dark and curly but returned to normal (grey and starchy) within the next year.

Around the 4th treatment I was so tired and off balance, I felt more comfortable using a cane and I drove those wheeled carts when shopping.

My husband washed every towel and wash cloth I used every day with bleach.  I wore face masks in public and hand sanitizer constantly.  Fortunately i never got an infection or other illnes, but I avoided many social situations during treatments.

My mostly controlled diabetic sugars on Metformin (a1c around 6) shot to over 350 (a1c over 8) on the Prednisone.  I am on Metformin, Trulicity and Insulin to keep the a1c around 6.

i got restless leg syndrome (RLS) and migraines sometime during the Rituxan “maintenance,” and was sent to a Neurologist who put me on Pramipexole Dihydrochloride daily for the RLS and Topiramate daily for the Migraines.  I haven’t had the RLS at all since then, and only one maybe two migraines since the Topirimate, for which I take Sumatriptan when needed.

Recent PET scans show activity is back in lymph nodes in my neck, armpit and groin area, so back to chemo for me.

Now, the addition to the diagnosis is that it is Indolent MCL.  This time treatment will be once a month Bendamustine and Rituxan for 6 months, and if that works, follow up with Rituxan every two months ongoing.

i am certainly not happy about the recurrence or what I read about side effects of Bendamustine-Rituxan, but, I will do whatever it takes to get another remission.  I can’t afford not to work, so I will work again through this one, and last time I only missed the 8 treatment days, the 8 days after treatment, and two other days that I just felt too awful to go in to work.

To sum up, yes this is not a happy time for me, my family, my friends, or co-workers.  i did not chose this as my path to walk through life.  But, chemicals, poisons, exhaustion, side effects hair loss and all, being that these alien cancer cells were in my bone marrow, blood, breasts, spleen, and who knows where else, all these miserable treatments have saved me from a sure path to death, for which I am extremely grateful.

i do have fear about the Bendamustine-Rituxan as my second round of treatments, so any personal stories or words of encouragement would be appreciated.

Hilde

illead's picture
illead
Posts: 846
Joined: Aug 2012

Bill's first line treatment was B/R.  He had no problems with either except about 3 days after each infusion he would feel tired, and a long nap took care of that.  He felt great other than that and it did not curtail his life.  I believe R-chop is much harsher than Bendamustine.  Also it does not attack the hair follicles so you will not lose your hair.  I hope it goes well for you.

Becky

Hilkei
Posts: 5
Joined: Jan 2018

Thanks for the info.  It seems more promising than the R-CHOP.

Hilkei
Posts: 5
Joined: Jan 2018

Hi Becky,

I hope you will see this post Because I would like to read what you think.

My health insurance isn’t approving the copays for the B/R so my Dr. is trying to get me on Calquence which seems to be AstraZeneca new pill similar to ibrutimab (sp?).  They will help with copay.  Does that make any sense to you?  Has anyone heard of Calquence or had experience with it?  I don’t think I would get The Rituxan just the Calquence but I’m not sure the doctor is still trying to get authorization for the treatments.

any thoughts are welcome.

Hilde

illead's picture
illead
Posts: 846
Joined: Aug 2012

Calquence is Acalabrutinib which has just been released for MCL and yes it is a form of Ibrutinib.  My husband Bill took Ibrutinib when he relapsed in '14.  It had just been released a few months earlier for MCL only as in those days they had nothing for relapsed MCL except temporary fixes with chemo.  He did very well on it and immediately went back into remission.  Starting about a year ago he started getting bad side effects from Ib so his local Onc took him off for 3 months and he relapsed, so he put him back on it.  That is when we went to Dr Wang at MD Anderson in Houston,  By the time we got there in May and he had a petscan there, he was in remission again.  The side effects got so bad again though that Dr Wang took him back off of it, so you guessed it, he relapsed again. He is now on Revlimid and Rituxan. and doing good.  Here is the good news about Acalabrutinib.  It doesn't have as bad of side effects if any as Ib.  We and his Onc here were hoping it would be released from trials sooner so Bill could switch to it.  We basically just missed it as it was fast tracked by the FDA just a few months ago.  So you are in the right place at the right time.  It, like Ib is very expensive, Ib is now around $15,000/mo but our Walmart/Humana rider to Medicare paid about 80% and we were funded for the rest.  The finance dept. of our local cancer center took care of that for us.  Same with Revlimid, the drug company pays what Humana doesn't.  If you have a cancer center, talk to the finance office, we have never had to pay a cent.  Thank you for keeping us updated and let me know if you have any questions or need further information.  If you don't mind to say where you are, there may be some experts with MCL close by that I am aware of. 

Hoping for the best,

Becky

 

Hilkei
Posts: 5
Joined: Jan 2018

I actually answered this post a while ago, but lost the connection at work and then couldn’t remember the website.  But, YAY, here I am.

i live in South Florida and still waiting for approval from Cigna for (a) chemotherapy and (b) Calquence.  I hope all this happens soon because it has been 7 months since the PET that first detected the recurrence, and one month waiting for the approvals.  How do you and Bill deal with the emotional side of this?  The first time through was fine, this time we both are much more fearful?

Thanks for your support!

Hilde

illead's picture
illead
Posts: 846
Joined: Aug 2012

I'm happy to hear from you.  I know exactly what you are going through, actually not exactly because I am not the one with MCL, but as you know the "we" is our collective feelings as a couple.  I know where you two are right now and I know the anxious feeling in the pit of your stomach and your emotions and thoughts and fears.  Each hurdle is harder but we really try to just go on having the mind set of taking one day at a time, which helps us just go on with our life.  Of course that is when he is in remission which is different than your case.  We have never been in the position of knowing there was treatment available but being at the mercy of the ins. co.  I can't imagine that, or the stress you are dealing with it.  What I said before though still stands, talk to the cancer center finance dept. and have them help you with grants from LRF, cancer society etc. to help with what Astra Zeneca doesn't pay and AZ may pay the whole thing.The finance dept should know all your options.  This time with Bill's Revlimid his funding ran out so the drug company is paying it all for a year.  I am sure that will be your case.  In the meantime though, you wait, that's not good, keep after them and your doctor.  He sounds like he is pretty much in the loop with MCL, so I'm sure he is watching you closely but you still have to be the squeaky wheel in a very diplomatic way.  I do know of Moffitt in Tampa which I'm sure you do too and I did a little research and found the names of Dr Sotomayer and Dr Shah, but as I said, it sounds like your Dr. is on top of things but it never hurts to have options. Finally Hilde, Bill and I have a very strong faith and we truly believe we have a better future ahead of us.  I am not meaning to get preachy but I have to be honest as to how we go on and our faith is the main reason.  Hang in there and please keep us updated.

Becky

Hilkei
Posts: 5
Joined: Jan 2018

Hi again Becky!

I am grateful to have found this board, this loop, and you.  You and Bill are my pioneers and I am very grateful for your guidance and thoughts.  Still not resolved, but the solution is closer, and soon I anticipate I will be on the Calquence.  And yes, the finances should be ok — either zero, or the very worst, less than $1000 for the whole year.

Happy/not happy with the meds and any side effects we shall see, but I do have faith.  I think having MCL as a female taught me that.  Rare cancer to get, rarer for a woman ... I beat the odds before, so I hope to do it again.  Thanks for checking in and sharing your knowledge and experience.  

Hilde

campinmaine
Posts: 5
Joined: Dec 2017

Hi Hilkei, I wish you the best with your treatments. I'm recently iagnosed with MCL and will be meeting with Dr Shah at Moffitt on 2/8 to get his sugestons for treatment. I have been writing privatly about how I feel about he whole experience and that has helped me focus. On the positve side it reinforces how precious each day is and has made me try to squeze the most out of my days. None of us are living forever and most of us go through each day as if we are.  Becky is a great comfort and the only person I have seen that regularly posts replies. Thanks Becky!  I have ben waiting a couple months for an appointment with Dr Shah but he is he MCL expert at Moffitt. I also have an appointment the following week with Dr. Wang in Houston for a second opinion. I also had to argue with my insurance company about covering that.  I aso had to fight to get them to pay for tests they said were not needed. (PET Scan) I believe we must be our own best advocate. There is also so much info about new treatments on the web. I search the "news" tab on Google for Mantle Cell and there are new articles almost every week. I'm sure you will do great and have many more healthy years ahead of you.

 

illead's picture
illead
Posts: 846
Joined: Aug 2012

Well, some of us have been on this forum for quite a few years.  It has really slowed down though and not as many posters or ones that stick around, but we're here and most of us try to answer.  I think if it's not our area we let the ones who know more answer certain ones.  Maybe it appears I have been answering more because there seems to be a glut of MCLers lately, (don't know if that is such a good thing)Undecided.  I am so sorry for your diagnosis but like you say, there is so much out there now.  When Bill was first diagnosed in '11, there was barely anything, it was pretty bleak.  I did some research for another person with MCL in Florida and saw Dr Shah, in fact another poster here is going to him I think.  I also saw Dr. Sotomayer at Moffitt, but I am pretty sure they work as a team so you will get good care and of course if you have read my posts you know Dr. Wang is our hero.  Tell him you talked to the wife of Bill from Sacramento, We live close to there but that is how he remembers us.  Hoping the best for you and please update us if you have a chance.  BTW, you are very smart to get right on this and know you will wait until you see Dr Wang before making a final decision.  You are a good advocate for yourself, keep fighting!

Becky

ginablakeslee
Posts: 3
Joined: Apr 2013

Well, it is CT time for me which sends me back to MCL board-land.  (FYI original dx, 1/5/2012- R-hyper-cvad a and b x 4, BEAM, auto SCT (6/19/12) , 5 years Rituxan Manitenance. Just stopped Rituxan. When Dr asked

... why stop Rituxan, he said, "Because I don't think you need it anymore". I certainly hope he is right! IVIG as needed, for life. Scan is 2/26. I feel perfectly well and have for a long time.

Becky, you take my breath away. I want you to know that you and Bill have been an amazing source of support and info for me as I have made this journey. I know I am not alone! You have helped many in crisis with information and support. Thank you!

Hugs,

Gina Blakeslee

(content removed by CSN staff)

illead's picture
illead
Posts: 846
Joined: Aug 2012

Thank you for your kind words, I don't quite know what to say.  Most of us try to share what we know, I'm just zeroed in on MCL I guess.  I know I owe you a priv message, just too much going on.  As we talked quite awhile ago, I would like to know what the statistics are with men vs women in long term remission for MCL since it is rare for a woman to have it.  I sure hope you do well with the ct.  You have been so fortunate, I am so happy for you and my wish is that you will continue to remain in remission.  I will get a p msg off to you eventually, I am getting caught up Undecided.  Oh yes, Bill had a clear petscan, we just found out last week, he feels great again.

Hugs back, thinking of you,

Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Delighted to hear this great PET news regarding Bill, Becky.  He rates a hug also !

max

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