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Fast Relapse. Going to Sarah Cannon for stem cell trans. ISO like for info

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Well, here we go again. I thought I was a survivor but I guess I have to put my fighting gloves on again. 

I'm seeking anyone that has had stem cell autologous transplant for Large B cell NHL. I've read general info but would like to chat with someone that has actually been through it. I have my first consult scheduled at Sarah Cannon Cancer Center. Would like to talk to someone that has been there also.

It's very challlenging trying to comprehend being told I'm cancer free, hair coming back thicker and better than ever, feeling almost "normal" then the hard crash of the Drs saying it's back and needing a more difficult treatment. Supposively, xanax is the miracle drug to deal with the head part. I hate taking meds and now I'm a walking pharmacy. Less than 3 months of happiness.... now, terrified again.

ShadyGuy's picture
ShadyGuy
Posts: 397
Joined: Jan 2017

to hear of your rapid relapse. I have no experience with transplants but several people on here do. I am certain someone will chime in soon. You are strong. Try to stay that way. You can do it. Without details I too am suffering some very serious, life threatening complications. My approach is to keep moving. We all are different in how we deal with these things. Your cancer is curable. Remember that and plod onward. Best of luck. 

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

I truly mean that. I read some of your post and have to say I stand with you on a lot of your opinions and beliefs. Just wanted you to know that. I just don't post my opinions as much. Positive thoughts and energy never hurt anything and they are sent your way. (some call them prayers... you are being thought about in a good way....either way it's a positive) Take care of you!

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Hello crittermamalori, 

I relapsed after only 5 months. I know exactly how you feel with the hair finally coming back and bang, it’s gone again! 

Tomorrow will be the 2 year anniversary of my SCT.  If you look back at all of my posts you might find some of my journey.  I have a hard time remembering it all now. It is doable though!  I was in the hospital for about 3 weeks, although I know that some hospitals do it outpatient now.  The collection of stem cells was a breeze! BEAM was a bit tough, but I still walked the halls daily, showered daily etc.  I remember my appetite decreasing a lot, but that was to be expected I guess. The fatigue was quite high. 

I have to say that the worry part doesn’t change much. I worry everyday. I have an appointment with my oncologist Friday and I can already tell my anxiety is creeping up! 

You can do it!!

Sharon

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Sharon, I will be trying to navigate thru your posts. I  have a couple weeks before consult so lots of research time. I have been told I will be out of my home for at least a month. About 4 hours away.

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

I guess I'm not sure how to get to just your specific posts.... any suggestions?

Sal0101's picture
Sal0101
Posts: 125
Joined: Sep 2015

Wish I could help with that.  I could only find them by scrolling and looking for sal0101. Maybe someone else has some insight.

Sharon

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Critter,

Use Sharon and Shady's insightful words to keep motivated.

While I have not had a SCT, aggressive large B-cell lymphoma commonly does require transplantation, with very good statistical results.  In some ironic ways, aggressive NHL is sometimes easier to deal with than indolent, since aggrerssive lymphomas are often curable, while indolent forms are not (I have an extremely indolent HL, which is similiar -- not curable by definition and clinical experience).  I am NOT saying that aggressive disease is "good', but rather simply that it is often more survivable, long-term, than indolent. Even if second-  or third-line therapy is required.

Your attitude seems excellent. The best of luck to you,

max

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Outside appearance may not reflect the terrified inside but I'm trying. Just trying to get as much inside info as I can before I go. Leaving my home for a month is scary too. I just want my life back.... I had it for a minute and now it's gone again.

Evarista
Posts: 261
Joined: May 2017

So sorry to hear this, Critter.  About finding old posts:  very hard to do unless someone has included their "handle" in their post.  I can find several of yours because people have mentioned your name.  Unfortunately, the search feature requires at least 4 letters, so finding Sal's posts is going to be hard.

I wish you all the best with this.  -Evarista

Bill1958's picture
Bill1958
Posts: 62
Joined: Feb 2018

Sorry to hear this news CritterMamaLori.  I have been reading this thread over and over and my heart goes out to you, your husband and your pets.  I have also read about SCTs and find them to be very promising for 2nd line treatments of dlbc NHL's.  Personally, although I am in remission from stage 4 dlbc, I dread at times the chance of relapse(my last treat was July 3rd, 2018).  It's like every pain or new feeling is the nasty monster coming back.  But living life is all that makes it all go away if only for a short time.  Good luck to you CritterMamaLori!

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

EVERYONE should have a person in their lives like this young lady. She is the head chemo nurse where I received my chemo treatment first go around. She explains things so you can actually comprehend each and everything you want to know. She has been involved in SCT in a few cases and gave me a really detailed synopsis of what will happen. Not that any case is the same but I think I can cope with this better than I had been with the unknowing. I also found out that they don't want to start chemo first because of how my cancer is morphing to try to survive in me. (Being "special" is cool but not this kind of "special") My angel said that she will be surprised if they don't keep me on consult and start harvesting right away or send me home for a couple days and I will have to come right back. Personally, I would like to come back home for a couple days to regroup before having to stay a whole month but the other part of me just wants to get it started and over with.

I'm finding that through my job I have tons more support than I ever imagined from people I hardly know. Some people are just incredibly amazing and I will forever be indebted. My boss is one of those in that group. My husbands job is trying to work with him also so hopefully when all said and done we can go back to some normalcy.

I will try to keep posting and maybe help someone else that need some personal insight while I go through this journey.

All good thoughts, energy and prayers are well received and know that I have all of us in my heart hoping for that miracle of freedom of this crazy rotten disease.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Critter,

My wife had to go on the Federal Family Leave Act when I was sick (FFLA).

I met many of the greatest people I've ever encounterd at the infusion centers.  It is a breed apart, even among nurses.

One infusion nurse had to fill in with me one day -- not my regular person.  She was unbelievable, and I learned later that day that she had had advanced lymphoma, and a few years later stage II or III breast cancer.  She had a segment on local TV news which I later watched.   

I came to know that there is significant burnout among these people however. My own NP during infusion was not there one week when I came in, and I asked about her. They said "she could not do oncology anymore," and had moved into a different nursing field at a different hospital.

Realize that at times THEY need OUR support and positive feeback also.

Again, just a stellar crowd,

max

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

I've always tried to be the kind of person that gave kudoos and credit when due. Too many only hear things when they go wrong or someone isn't happy. 

My husband's boss has gone through as a caregiver and is very supportive of what needs to be done. He understands every step and what might have to happen. Our jobs are very safe and will be waiting. 

Thanks Max for all you do. So many on here have been very informative and supportive for others. I brag about this site often to others going through this crappy disease.

philr828
Posts: 17
Joined: Nov 2017

I never realized that there was a burnout among the staff at infusion centers. I only thought of my specific problems and I commend them too and will not forget about them when I revisit every 3 months.

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Hi, philr,

A friend was dying with prostate cancer in 2013. He was an inpatient at our local teaching hospital, but I worked odd hours, getting off at 3:00 AM every night. But the hospital let me go by on my way home at 3:30 AM after work nonetheless.

I went in one night and got to talking to the supervisory floor nurse at the desk, an RN. Young woman, maybe 30.  Since it was obvious from our conversation that I knew my friend's doctors and NPs, she asked me how I knew about cancer, and I related my own battle with HL, which was treated by the same Cancer Center that ran the inpatient floor, but my care was just as an outpatient.

She made a comment that really stuck with me. She said, "It is so great to hear from a patient who made it, who is well. I wish my coworkers were here to hear your story.  We almost never hear back from our patients, not in a good way."

Obviously, she meant that most people on her floor died.  She did not say it in a way that was morbid or fatalistic, just sort of "that's how it usually is. We do our best."

My treatment was six months of chemo. Two all-day visits per month, once every other Friday.  I got to know maybe five people at the infusion center fairly well, since they mostly had staggered schedules for infusion, not the easy two-week schedule that I had. What I'm saying is that although it was six months, most other people there I saw only on occasion.  Several others I recognized and would speak to, in passing.

Of those five, all died shorthly thereafter.  None of them had lymphma, except one former coworker, who had Mantle Cell.

It would be hard for anyone to do that for a living, long-term. We must respect and prize them for what they do.

max

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Lori,

I had a stem cell transplant on 7/24/17 for Large B-cell.  Mine also morphed so I was called "Double Hit", very aggessive.  I had 6 months of Hyper-CVAD chemo with 8 Spinal chemos of Methotrexate and Cytoxin.  I had the transplant done at Dana Farber in Boston, MA.  The hardest part of the transplant for me was the isolation.  The treatment itself is doable, the BEAM chemo does a job on your digestive system so I did lose my appetite and have diarrhea at the end.  I was inpatient for my transplant, but I was in contact with a woman who had hers at Sloan-Kettering in NY and she was out-patient. I was "quarantined" for 30-90 days (different degrees) after the transplant which surprisingly went fast.  If you have any specific questions, I would be happy to answer them if I can.  Best Wishes to you and your journey.  ~Cat

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Hi Cat, I have sent you a PM with a couple questions.... for now. Maybe more to follow. :-)

Lori

PeprmntPat55's picture
PeprmntPat55
Posts: 59
Joined: Aug 2016

For  you, Critters. I'm so sorry for your seemingly quick relapse. I have no experience with SCT but I pray that you will be directed and that you will remain positive and calm. 

Pat

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Thank you Pat for your thoughts and prayers. I'm trying to stay positive. 

All the best to you and yours through your journey.

Lori

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3293
Joined: May 2012

Great to see you stopping in for a post, Peppermint.  Havn't seen you in some time. I hope that all is well with you,

max

po18guy
Posts: 994
Joined: Nov 2011

But there is a dedicated transplant forum at www.cancerforums.net. Even though my transplant was far different from that planned for you, there are many overlapping concerns.

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

My new oncologist and I were discussing options and a clinical study came up. Unfortunately, as with the first biopsy my neck started to swell and we decided that we shouldn't wait to begin treatment again. I am now on a RICE chemo treatment.  I will be headed home soon to continue the treatment. When I start to head towards remission they will start making plans for me to come back and harvest cells. This is going to be a much longer treatment than anticipated. I'm to that point of just wanting to get going and knock this beast out. Hurry up and wait is the hardest.

I'm still trying to comprehend why it has taken so long to get this far. One says they didn't want to mess up what the other was going to do and that one says anything that the first one could do wouldn't have messed anything up.....again, as usual the right hand doesnt know what the left is doing. My new oncologists seems very compasionate and personable. I'm glad he's the one in charge now.

lindary's picture
lindary
Posts: 650
Joined: Mar 2015

My treatment for follicular lymphoma started in 2015 with 6 cycles of R-CHOP. When that did not get me into remission I was sent to Rush in Chgo with the goal of having SCT. I went through 3 cycles of RICE. Then was monitored for about 3 months, blood test and scans. During that time I made my list of stuff to bring with for the stay. Main things were books (paper & eBooks) plus my electronics. That was my laptop & tablet plus my work laptop. (Of course the cell phone.)  When it came time to harvest the cells  I did not do well. We didn't get even the minimum amount in 2 days and my platelets kept dropping. On the third day they had just got me hooked up when the Dr stopped. The platelets had gotten too low to continue. It took a everal weeks for them to get to the minimum level. By then they put SCT on hold and 2 months later cancelled it completely. The SCT DR told me that since it took so long for the platlets to recover and that I was doing well they decided that for me it would be safer to not do SCT. She added that if it came back, depending on when, there would likely be new chemo treatments to use first.   Part of me was kind of sad it was cancelled and another part was glad.

So far so good. My oncologist retired in Aug 2017. My new oncologist is from Rush and I will be seeing her in about 10 days. If all looks good I will go on the 6 months plan for visits.

 

CritterMamaLori

I send you good thoughts for your SCT.  It seems so much of cancer treatment is a Hurry up and Wait situation. 

CritterMamaLori's picture
CritterMamaLori
Posts: 42
Joined: Feb 2018

Thanks so much for the info. Chemo is kicking my butt again. Hope you continue on your positive journey and your new Onco is the best.

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