POST BMT 1-Year & 7 Months, BOY OH BO... - CLL Support Assoc...

CLL Support Association
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POST BMT 1-Year & 7 Months, BOY OH BOY!!!

“Ring the bells that still can ring

Forget your perfect offering

There is a crack, a crack in everything

That’s how the light gets in.”

Leonard Cohen “Anthem,” The Future album 1992

It has been far to long since my last post but boy have we been through the ringer!!

I do want to apologize for those folks who rely on updates from other CLLer’s to help guide them on their next steps, but Mark and I have been through quite the ordeal once again and we have honestly been grieving as he relapsed shortly after my post celebrating his 1-year anniversary following his BMT.

We have also been grieving the loss of Chris and Lola – as many of you have shared Mark also developed a lovely and supportive relationship with Chris and both of us were beyond sad to lose him and then Lola so shortly after.

Quick recap:

Diagnosed at 45 – treated with FCR (Jan. 2011)

Relapsed Nov. 2014 and confirmed 17P treated with Imbruvica

Relapsed Oct./Nov. 2016 and treated with Venclexta and 4 infusions of Rituxan

Nov. 2017 Bone Marrow Transplant

Relapsed Dec. 2018 currently back on Venclexta

When we arrived at our 1-year anniversary post BMT – everything was going well. I posted it on HealthUnlocked, and shared how grateful Mark and I were. The recovery from BMT is no easy task - the year was overwhelming, but it was one of the best years we had since Mark was diagnosed. For those of you who have gone through BMT you know what I am talking about – it is brutal, but like I have said in the past it was our only option as Car-T was not available in Canada. It was the first time since his first relapse that Mark was not on any Cancer treatment and he was feeling like his old “new” self.

Unfortunately, in Dec. 2018 Mark’s blood counts began to rise and he was dealing with a cough/cold that he just could not seem to shake. His Health Care Team decided to run a chimeric test (ratio between donor vs. host cells) and we found out that Mark’s had dropped significantly from 94% to 53%, and his blood counts rising and Mark knowing his body we realized that his CLL was back. _____________ (please insert profanity here)!!!

It was confirmed - NOW WHAT!!

I cannot express how devastated we were – BMT was our golden ticket or so we hoped. We had worked so hard in not getting ahead of ourselves and that he “was cured”, but all the statistics and reading we had done and having passed the 1-year milestone we felt we had gotten over the hump and now we could possibly “relax” for a bit. His Dr’s also felt the same way – everything was going well.

Besides Mark’s initial diagnosis back in 2010 – as a couple we were never so sad and unable to help one another. Both of us were trying to wrap our heads around “why us”.Those of us in this Cancer world know these feelings are normal, but we also know you can’t stay in that mindset for too long or else Cancer wins. Our grieving was vast and we both knew that we would need to get past this hurdle and once again dawn our suit of armor and start the fight yet AGAIN! It was very challenging – we were lost. Thank goodness for professional help, and the support of family and friends to help us through the sadness.

What’s the plan – our situation became a little unique, we needed to try and kick start the BMT back to where it needed to be as well as treat the CLL directly. Our Health Care Team suggested that we do a “top-up” DLI (Donor Leukocyte Infusion). Mark had suggested a DLI to his Dr. back in Sept. 2018, he had read a few articles and stats supporting the intro of DLI’s as part of BMT protocol to lessen the chances of relapse. But as I mentioned earlier everyone felt things were going well so why mess with it. So, plan was start DLI’s and hope that we could activate GVHD (graft vs. host disease) which in turn would activate GVL (graft vs. Leukemia). First DLI was scheduled for Jan. 16th – pretty straight forward, very simple like a blood transfusion but a quarter of the time.

Shortly after the DLI Mark ended up being admitted into the hospital as he health was in total chaos - pneumonia, GVHD was starting to show its self (Mark had very little GVHD during his BMT), warm antibody hemolytic anemia (the presence of autoantibodies that attach to and destroy red blood cells), and we also had to treat his CLL. His Hematologist started Mark back on Venclexta as well as steroids for the antibody challenge while he was in hospital and he responded well to both treatments.

His GVHD was all over the place, his ears, eyes, mouth, skin, lungs, gut etc. – it was steroid after steroid, anti-biotic after anti-biotic etc. His energy levels were at a record low and his emotional and spiritual state was also having a huge impact on his overall wellbeing. Again, the sadness in our home was palpable and never mind the time of year, winter can be harsh in Canada.

The treatment of GVHD is a tricky one as you can’t treat it systemically because you need the GVHD to continue to activate the GVL – it becomes a balancing act but at the cost of the patient. So once his CLL was under control and his chimerism was improving, we were now at 78%, it was time for another DLI (March 9th) and this second transfusion was a higher dosage but not by much. Once again GVHD came with a vengeance but some how we managed.

Mark has been a trooper - I’m not sure I would have the strength to endure all that he has and continues to go through. He really is my hero, and I’m so grateful that he continues to fight as well as always educating and advocating for himself.

So where are we today: as of last week his chimerism is at 96.2%, there is some really positive activity going on with his T cells, (it’s crazy how granular they can get today), blood counts are “normal” and he remains on Venclexta. His energy is much better, and he is getting his skip back in his step and just returned from California meeting with the CLL Society/Dr. Koffman to set up a CLL support group in Toronto later this summer.

My apologies for the lengthy post but it has taken us this long to try to get back to a stable place in our lives, and this forum is a safe place due to the overwhelming support & kindness we continue to receive from everyone. I hope in sharing our progress that it will help others make the best decision for themselves while trying to navigate this crazy road!! And a reminder when you think that there is no place to turn somehow a small light begins to show itself!

Thank you,

NMMP

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Wow! You guys have been through it! Hopefully Mark is on an upward trend that will last! My hat is off to him for enduring what he has had to endure, just in the last 5 months! It makes the little issues I have been going through seem like a walk in the park. Praying that he continues to improve daily and that this will be the last big hurdle he faces in this unremitting disease!

BeckyL USA

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Thank you Becky - appreciate the support.

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NMMP,

That is an incredible journey of personal strength and resilience you and Mark are on. I wish you and Mark all the strength and support needed to fight this.

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Thank you :)

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Oh my! Words fail for such a long and circuitous road to throwing everything possible at this most devious of cancers. "Its Always Something" as the comedienne, Gilda Radner's character, said.

Thank you so much for thinking of us as you and Mark have struggled on such an arduous path for so long. While it appears from a distance that time has passed quickly, I am sure there are times you experience a feeling the surreal and of time agonizingly standing still.

Your inspiring story of all that can be overcome bit by bit to have some glimmer of hope in the day being brighter and feeling well enough to get a bit of skip in your step gives us all a lift.

May you and Mark find some rest of mind, body, and soul as his treatment with Venetoclax allows for some respite from the fight.

(Well, the words came, didn't they!)

EDIT:::Love your Cohen quote--it is one I need to remember daily.

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Thank you CLLady - Cohen is always close by, his gift of language has always spoken to us.

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Thank you for your eloquent and emotional post NMMP. I'm sending my very best wishes for your husband's continued recovery and peace in your life.

Jackie

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thank you Jm954

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Good for you guys for hanging in there.

john

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You and Mark sure have been through the ringer! Mark sounds like such a strong willed person and you seam so caring and uplifting. Thank you so much for sharing your experience with us. I know that BMT's can be a harrowing experience. My brother in law had one a few years ago and unfortunately didn't make it past almost a year. He was doing OK, but get really bad graft vs host and then sepsis. He fought for a long time, but in the end was ready to go. It took so much out of him and his family. It affected me in a big way too because he found out that he had stage four lymphoma the same day that I found out about my CLL.

Hang in there, I know you can beat this as a team. We'll all be praying.

Chris

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I'm sorry for your loss and thank you for your prayers and support.

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Thank you for that inspirational story. May you both find health and peace as the Light gets in...........Leonard had precious words for every possible situation.

Anne

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Thank you Annie and yes Leonard really does :)

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wow --- _____________ (insert profanity here)!!! indeed.... sending supportive thoughts to the max. now this first half of 2019 is behind you -- onward and upward! i am so glad the DLIs seem to be turning the tide again - a terrible, rough time, but with so much improvement! hoping like crazy he carries on with this improving trend.

we all need support sometimes, so you be sure to keep leaning on whoever you need to lean on to get you through the worst bits. (((hugs)))

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absolutely!! Onward and upward - we are looking forward to the warm summer months and thank you for the kind words.

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I am so very sorry to hear of the struggles Mark has had as a patient, and you as his loving partner. I just hope that Mark continues to feel better every day and that his health improves.

Thank you Mark for helping to start the CLL support group in Toronto.

All the very best,

Sandy Beaches

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NMMP,

Thank you SO MUCH for taking the time to write your post, despite the mammoth challenges you and Mark have been facing. It is such a gift to us - not something you need to apologize for.

One of the qualities of the forum I value so much is reading the posts of so many brave and courageous people like you and your husband who, despite their setbacks and devastating disappointments, soldier on with determination to do everything in their power to fight this disease. When we share your journey via the forum, it makes us not only stronger but we learn so much. After all, we can never be certain what own future will hold.

Wishing Mark a very successful treatment and outcome. All the best to both of you and please keep us updated.

Hugs,

D.

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Thank you Mystic75 - this forum helps us a great deal, it really reminds Mark and I that we are not alone in this battle.

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Absolutely true and I know I get so much strength and information from it.

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Sorry to hear that things took a downturn, very happy however that everything seems to be going better again now. I can't imagine how difficult all this must be and hope Mark continues to improve, you both certainly have the fighting spirit to win, God bless, Terry

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Sorry to hear about the tough sequence of treatments. I hope you all catch a break. Did they know he was 17P before FCR in 2011? How's the Venclexta working for him? Did you all choose transplant because it wasn't working or you were looking for a better long term solution?

I had almost the exact same dilemma(s) with the same diagnosis year, although I was about 12 years younger at the time. I was TP 53 mutated and initially recommended FCR+Campath. I waited and instead did Ibrutinib in trial for almost 7 years and then started Venclexta about 3 months ago. I'm finding it increasingly difficult to know which fork to take in the road. Venclexta, Venclexta + Rituximab, or Venclexta + Obintuzamab, or CAR-T etc. Thanks for sharing your journey.

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Hi DoNorth - thank you we actually feel like we are on a break at the moment and we will take it regardless of how long it will last. The lesson for us is ENJOY our time because we just never know.

Mark found out he was 17P after his 1st relapse so post FCR - it sounds like you have had to make a few tough choices on your treatment too. We found the comb of V + Rituximab really effective and got Mark to a "healthy" place prior to BMT which is what we wanted. However, having to make these choices is really tough - wishing you the best.

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Lots of love and support sent to you both.

Sue

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Love and strength to you both. Hope the crack of light grows and grows!

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Wishing the road yet to be travelled is well lit, and you too get peace to recover from the trauma of the past months.

Best wishes

Bubnjay1

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Thank you for sharing yours and your husbands absolute nightmarish, roller coaster journey. My husband also has an aggressive cll (diagnosed 4 years ago, tp53, unmutated) and he has been on Ibrutinib almost two months. So far so good, but I totally understand the caution you have to feel and the need to prepare for what’s next! We too live in Canada (northern Ontario), so it is great to hear of you helping with a support group in Toronto. Wishing your husband some smoother roads ahead! Thanks again!

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Thank you Garcar - all the best with your husband's treatment.

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Thanks so much for taking the time to document what has happened. My husband had a BMT a year and 4 months ago and we know the tightrope that the patient maneuvers through a procedure like this. May you and Mark continue to have courage and strength through all of this and our prayers are with you.

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Thank you Glees - fingers crossed that your husband's BMT runs a long a smooth path and appreciate the prayers.

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That was some painful and scary experience for both of you, so sorry you had to go through it 🤗

Hope for better and peaceful journey.

I also live in Canada ( Oakville), and to have good self help group would be very helpful. Is it starting this summer?

Dana🇨🇦

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Hi Studebaker - thank you and yes the goal is to start the support group in Aug./Sept. and Mark is just working on a few logistics.

Make sure you expressed your interest through the CLL Society so that you will receive any and all communication on when it start.

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Thank you

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Sharing your strength is a great encouragement to all of us.

You deserve to be successful in this challenge and I hope that you are.

JM

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Thank you Smakwater

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Hi,

You've both been through a really difficult year and hopefully now things will improve for you both.

Wishing Mark all the best as he continues with his treatment.

Take care,

Love

Louise x

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Fingers crossed that things will get easier. Don’t apologise for not posting, we’re always pleased to catch up. Sometimes there’s simply too much to do. You’ve been through a lot-rest up.

Peggy 😀

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Amazing and very impressive !!! I have always thought that you and your husband are very strong but now I am in awe !

We are also from Toronto and I hope to meet you later in the summer when the Toronto group starts.

Regards, Ileana

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You did bring tears to my eyes as I read your account. I also am a caretaker and realize how difficult it is for us to watch the man that we love so much in pain and suffering. I also think it was very valuable to share your emotional roller coaster as well as the physical one. So much fear, so much worry, some sadness as we all maneuver through this journey. God bless you and your husband and lots of hope that the road becomes smoother and filled with the white light of healing.

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Thank you kathymac52 - yes being a CarePartner is not an easy road, not to take away from the patient but as you said it is so difficult to watch the person you love go through so much.

I always say CarePartner’s are special people :).

All the best to you and your husband.

Take care,

Nelia

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thank you for sharing. You are a very good writer good. Good luck to both of you and be well,

CLL Society is a great organization and has been very helpful to me.

Hoffy

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Thank you Hoffy and all the best to you.

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What....A....Story.

What...A...Caregiver.

What...A.....Trooper.

Thank you for sharing, NMMP. Very helpful on many fronts!

Wishing strength and wisdom for both of you.

- Bobby

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thinking of you often. hope things are still on the right track! and that you continue to feel steadier and steadier. our emotional health is such a big part of this whole thing.

i haven't found a forum nearly as good as this one for gvhd but do follow two FB groups on the topic and learn a bit there. this is a good article. gvhd is still a "tough nut to crack" though.

fredhutch.org/en/news/cente...

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Hi Sumok - thank you and can't agree with you more regarding our emotional health it is so important especially when it comes to the cancer battle.

Mark is still doing "well" and we are enjoying it for as long as it continues and planning a road trip in July to see the East Coast of Canada and very excited about it.

Thank for the GVHD link - we will certainly take a look and hope you are doing well and again THANK YOU!!!

Nelia

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Ken is having a tough time, skin gvhd is rough right now. they really are remarkable, our guys, dealing with such challenges. work in progress, eh?

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