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Relapsed Follicular Lymphoma options and advice please!

janekren
Posts: 6
Joined: Apr 2021

Hi,

I'm new here and looking for advice, information, and feedback to help me make the biggest decision of my life!  I have Relapsed Stage 1-2 Follicular lymphoma (diagnosed 5 years ago) which is primarily in my small intestines (jejunem) which causes intestinal wall thickening resulting in small bowel obstructions.  I have been treated with Rituximab twice, then Obinituzimab + Bendamustine with Obin maintenance (and relapsed while on maintenance), and most recently Rituximab + Lenalidomide.  I am now in remission, but my doctor thinks it will be short (less than 12 months) and recommends I do an autologous stem cell transplant.  I got 2 second opinions and got 2 different recommendations - a mini-allogenic transplant and "watch, wait, and continue treatments as needed".  Has anyone on here gone through something similar and how did you decide what to do????

 

Jane

Silver02
Posts: 14
Joined: Apr 2021

Hello Janekren,

I'm glad to hear that you are currently in remission and hoping it stays that way!

I had a similar experience to yours with my cancer, I was diagnosed with recurrent refractory hodgkins lymphoma and my doctor said my chances to remain NED were very low without an autologous stem cell transplant, I honestly trust my doctor and thought I'd follow his recommendation which I did. I am now 44 days post transplant, I wouldn't say it was the easiest, if you are willing to take the transplant route just make sure you make enough research regarding that matter and what to expect during and after your stay at the hospital. When it comes to transplant there is so much recovering to do afterwards and chemos side effects differ from a person to another but at least you'll have an insight ito what to expect and prepare yourself mentally and physically.

My decision was based on statistics purely, I asked the doctor about my numbers with and without transplant and he showed me statistic charts. They've been doing this for decades and I would listen to my guts but I would also put science into consideration.

If you have any more questions regarding the transplant I would love to share 

janekren
Posts: 6
Joined: Apr 2021

Hi Silver02,

Thanks so much for replying!  I hope you are starting to feel better and better everyday.  I assume you are back home now since you are 44 days post transplant?  Where did you have your transplant?  How are you feeling?  Have you started to get your energy back?  Do you still need a caregiver?  Did you lose your hair?  How are you dealing with that?  I have so many questions - sorry!  I am so concerned and worried about the recovery from the BMT!  I wish my doctor had shared statistics with me as I am a very logical thinker and I think statistics would help me make a decision.  I will ask him for that information on my followup next week.  Wishing you all the best with your recovery and hoping this puts you in remission for a very, very long time!

 

Jane

Silver02
Posts: 14
Joined: Apr 2021

Please ask all the questions you want! I'm here to help as much as I can.

so to answer your questions, Yes, I am home I was discharge on day 14 post transplant. I am feeling better than when I first got discharged, the fatigue subsided I would say 80% and my taste buds are slowly tasting again. I did lose my hair and I had chemo burn all over my neck, chest, underarm and inner thigh. My skin is slowly shedding. I stopped needing a caregiver almost 2 weeks post my discharge which is around day 30. My mom is still around though. It would be ideal if the caregiver stayed for the first 100 days since its the most crucial time post transplant were patients are susceptible to complications. Yes, I did lose my hair, I don't know how fast it was going to be though because I decided to shave it before it started falling off but my head is completely bald right now. This is my 3rd time losing my hair so I kinda got used to it, not as devestating as the first time. i have wigs around which I wear when I go out and that increases my self-confidence and overall how I'm feeling.

I don't know alot about BMT but I'm assuming you're recieving from a donor for the transplant. If thats the case then based on my knowledge some side effects might differ because I had an autologous SCT which means I don't have a risk of developing GVHD whereas BMT or even SCT recieving from a donor do have a risk. 

I think its a great idea to look into statistics and even clinical traits regarding BMT and you can also ask the doctor what to expect during and after being in the hospital.

thank you so much for your wishes I wish you a life long of NED 

if you have any more questions do not hesitate 

 

janekren
Posts: 6
Joined: Apr 2021

Thanks for sharing your experience.  I'm happy for you that your fatigue has subsided 80% by 45 days post transplant!  That's encouraging! Do you feel strong enough to get outside for walks at all yet?  Or is the risk of infection too high to consider being outside?

I am not sure yet if I will get an autologous or allogenic transplant.  I am trying to decide between the two.  Auto seems safer (no GVHD risk) but allo seems like it could provide longer remission.  I reallly don't want to go through this experience twice, so maybe leaning towards allo, but still unsure.

Silver02
Posts: 14
Joined: Apr 2021

Yes, I am strong enough to go out on my own. Regarding the risk of infection, the doctor told me to stay away from crowded places but encourged me to have daily walks at the park while maintain distance and wearing a mask.

I understand, its an experience you don't want to go to waste because its a big deal. when I was going for a transplant I made so much research, I even studied my 23 pages long consent form and wrote down any questions I had, literally any question that came in mind because I wanted to be fully aware of everything I'm putting myself in. So I prepared a long list of questions and when I saw my doctor before my transplant I asked all the questions and looked at statistics and by then I knew in my heart what was the right thing to do. So your doctor is there to make it clear for you and help you decide, you dont have to do all of the work on your own. if you feel like getting a second proffessionals opinion or even a third then go for it. Its a big step you're taking.

janekren
Posts: 6
Joined: Apr 2021

Glad to hear that you can go out and take walks!  I've talked to 3 doctors besides my own and I go 3 different answers!  So, now I have 4 options to consider and trying to navigate picking the best one!  I wish at least 2 of them said the same thing!

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