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BvICE, BEAM, and stem cell transplant

Pickleziad
Posts: 7
Joined: Jan 2018

Hello,

I was just treated for stage IV Hodgkin's lymphoma, my last chemo was December 28th. My final PET showed two new lymph nodes that were hot, turns out I have cancer again already, not one month after my treatment. My onc is planning for a transplant, I was wondering if anyone else has had this treatment and could tell me what to expect. I'm pretty scared about it all, and any information would be really helpful. Thank you in advance.

 

Pickle

po18guy
Posts: 988
Joined: Nov 2011

Are they talking both Bv-ICE as well as BEAM? Sounds pretty horrendous, maybe overkill. Here's a vid regarding Bv-ICE that shows some very positive results:

https://www.youtube.com/watch?v=7V3SVgJbn7c

Here are two potential salvage regimens as well. Newer combinations of older drugs with a synergistic effect.

TREC (Bendamustine, Rituxan, Etoposide, Carboplatin)

BGV (Bendamustine, Gemcitabine, Vinorelbine) - tested against relapsed Hodgkin's

Although most hematologists might not be comfortable with either, researchers and cutting-edge hematologists have used both. TREC, designed to lessen the toxicity of ICE, was particularly effective against two aggressive relapsed, heavily pre-treated T-Cell lymphomas in my case. Prior to absorbing the toxicity of ICE, I would ask about both salvage regimens. 

Pickleziad
Posts: 7
Joined: Jan 2018

Thank you for responding to me. Could I possibly trouble you for more info about all that? I want to have as much info as I can to present to my onc when I see him and talk about different salvage treatments with him. Currently he's all for BvICE and stem cell transplant, mainly becauase I was stage IV when I was diagnosed and relapsed barely a month after treatment. I think he's wanting to just blast it all out and hope for the best, whereas I'm more wanting not to kill myself more than I absolutely have to. If you could even direct me to where I can find all this info I would appreciate it.

Sal0101's picture
Sal0101
Posts: 124
Joined: Sep 2015

Hello Pickle, 

i had a b-cell NHL  (stage IV, but that really doesn’t matter) was treated with R-chop and relapsed after 5 months. My oncologist quickly moved me on to R-ICE which put me into remission again, and right into BEAM and a autogolous stem cell transplant. I was scared and it was exhausting but I’m now 18 months post SCT. I’ve had a few issues since then..lung issues, pneumonia (when I came home from a trip to Sicily in November) and most recently a bout of shingles which I’m just getting over BUT I’m still here and grateful everyday! I can’t wait until it gets a bit warmer here in Wisconsin so I can walk more.  fatigue is probably my biggest obstacle and hopefully walking will help combat that. 

Sharon 

po18guy
Posts: 988
Joined: Nov 2011

Not to offend your oncologist (if that is what you have), but general oncologists are neither specially trained, nor are they generally up to date on blood disorders such as leukemia/lymphoma. If your case is the slightest bit complicated, I would run for my life to a hematologist who specializes in the exact type that you have, traveling if necessary. If you are not at an NCI designated comprehensive cancer center, I strongly urge you to at least consult with research hematologist at such a center. Doing so has saved my life three times now.

As to scholarly articles, here is Dr. Cassaday's on Bv-ICE.

Here is an article on the safety and efficacy of TREC.

And, as to BGV (BeGV), results of this particular stody are not yet published.

Research hematologists can and will use each of these combinations, or even other "off-label" treatments according to the latest research data. But, doctor must think outside the box - and that is what researchers do. Cases of relapse are critical, as the cancer is now smarter than it originally was, having defeated all of the drugs used against it. A clinical trial may be your best bet. Search for trials here

Pickleziad
Posts: 7
Joined: Jan 2018

Hey po18guy,

 

I have a hematologist, I'm being treated at Seattle Cancer Care Alliance, it's a collaborative center between UW, and Fred Hutch. They do good work, but as I learned when I was first diagnosed there's a lot of info out there and while doctors try to stay current it doesn't always seem possible. I had a rare Hodgkin's symptom that was discovered and published about in 2016, and my onc had no idea it was even a thing. So I definitely am going to get a second opinion, if there's no other options I will take the transplant, but I would rather try less drastic measures first

po18guy
Posts: 988
Joined: Nov 2011

If you are stumping SCCA hematologists, then it points to the utter complexity of the disease. They work hand-in-glove with Fred Hutchinson, and so should possess the absolute latest in research data. If your pathology is absolutely correct - I ask this because occasionally Hodgkin's turns out to be Anaplastic Large Cell Lymphoma (ALCL), a T-Cell variety. And, I have also seen a diagnosis of ALCL re-examined only to have been Hodgkin's. Other than "Carcinomas of unknown primary", lymphomas are probably the most difficult to correctly diagnose. But, the UW pathologists have undoubtedly performed a test known as "flow cytometry" on your biopsy sample, so it should be nailed down pretty well. It is a remote possibility that two lymphomas could be present, as that occurred in my case - only one being detected via biopsy.

DJS628
Posts: 47
Joined: Mar 2018

Hi Pickleziad,

I am so sorry your cancer came back just a month after treatment!  And yes, cancer is very scary!  SCCA is a very good place.  They took good care of me and seem to really know their stuff regarding cancer and up-to-date treatments.  Don't be afraid to ask why they are recommending the treatment and why the transplant.  They will help you weigh  the pros and cons of other treatment options that are out there for you.

 

Getting a transplant isn't easy.  But the way I looked at it.......they explained to me that without the transplant, my lymphoma would more than likely be back within a year or less.  Each remission will be shorter. With the transplant, I had a better chance of being cured.  There are risks for every procedure.  They will explain things to you so you understand things better, then you can make a decision.

What's scary is that the transplant isn't guaranteed to cure you; it could still come back.   But the way I saw it, it was a chance for either a longer remission before it came back again, or a chance for being cured.  So I took the chance.  Living longer and if it comes back, there is always new treatment coming along.

I had stage one Diffuse Lrg B Cell Lymphoma, stage one, in Sept. 2015.  After R-Chop (3 treatments 21 days apart) and 15 radiation treatments, I was in remission.  But this past summer, in July, 2017, it came back (almost, but not quite 2 years later).  So I was sent to the SCCA for a transplant.  I really like the idea of having a whole team working towards making you better instead of having one doctor.  In my home town, I had my oncologist, but at SCCA, there were more oncologists who were specialists, plus all the others (ie: nurses, nutritionists, social worker, etc., etc). 

I wish you all the best & will add you to my prayer list, too. 

Take care,

Cyber Hugs,

 

DJS62859

Pickleziad
Posts: 7
Joined: Jan 2018

Biopsy

 

I'm getting a biopsy of the new lymph nodes in a couple days, I think my onc suspects the same, that possibly this recurrence is not just simply Hodgkin's. I should know within a few days, and I'll definitely mention the info you've shared here, and see if we can't figure out something.

preciousmom
Posts: 22
Joined: Feb 2012

My mom had a transplant about a year ago. Not to scare you but I think you should be scared. Nothing anyone told us was preparation for how ”hard” it was. I can’t think of a better word. Anyway, she got through it, you will too. What got us through was the hope that it could fully rid her of the cancer. I should add that mom was 70 at the time of transplant— I think younger people have an easier time. One of her symptoms was kind of a ”dementia” induced by the episode (more like psychosis!). I think that is not something youngers get. Thankfully that went away before she was discharged. I hope it will cure you! 

po18guy
Posts: 988
Joined: Nov 2011

...cannot help along this journey. Having confidence in your hematologist and the treatment regimen you are receiving can be of great comfort. We are wired to live, not to surender. Can transplant be tough? Certainly, but since life is worth living, you will find the energy and desire to fight this and live. You go through this one day at a time, which makes it all possible. I know a woman with a very difficult multi-relapsed case of multiple myeloma who has had an auto transplant which failed. She then went on to a tandem auto + allo transplant and failed that. She is now on various experimental drugs and she comes to visit me when I am in treatment there.

Fear is like worry: it is not helpful in any circumstance. 

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ShadyGuy
Posts: 386
Joined: Jan 2017

Fear is an involuntary physical response to danger. It just happens. Its  hardwired into us. Our heartbeat increases, hair stands up on our necks etc all involuntarily. Fear is an immediate thing. Courage is the overcoming of fear. If you are never fearful then technically you cannot be brave. Anxiety, though it has some physical components, is much more of a voluntary response which is often misdiagnosed as fear. Fear is a survival trait which gives near instant response to imminent danger and may well save your life. Anxiety is generally non productive “anticipatory fear” and needs to be controlled. It can ruin you. We all need to learn to relax and control anxiety. For me that process begins with acceptance of my dire situation as fact. It cannot be wished away. For me at least, that lays the groundwork for sound decision making and gives me the ability to enjoy whatever life I have left. We are all different but this works for me!

DJS628
Posts: 47
Joined: Mar 2018

Pickelziad,

 

Po just recommended a dedicated transplant forum to check out.  I just checked into it.  It would be worth your time to check it out, too.  You can post your exact questions and possibly get more answers over there.

 

Good luck!

 

It was a little hard to find it, but it's listed after the list of specific cancers.

 www.cancerforums.net

 

I hope you get the answers to help you decide about your treatment.  Good luck!

 

---DJS628

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