Follicular lymphoma

Follicular lymphoma is a type of non-Hodgkin lymphoma (NHL). If you're suffering from follicular lymphoma, or know someone who is, join this support group.

To have two year maintenance or not

jeanette 49
Posted by

I’m due to start maintenance on end. Feb but I have had three reactions on the r while I was having my six rounds of chemo r chop so I’m feeling pretty well at the moment apart from fatigue, I’m worried that I’m going to have two years of not feeling well again and side effects again, I have read some of you say it is not necessary makes no difference and some say go ahead, not sure what to do and back in the anxiety again, can you please let me know those that have had it tell me if they was rough on it I am worried of bad reaction again. Thanks jeanette49  hope you are all good.

Jeanette 49 hi just a update went for my check up and still have fluid around right lung consultant said he doesn’t know why as I’m clear of follicular lymphoma at the moment it must be something else so I have now got to wait for appointment for ct scan and see chest consultant looks like back on the rollercoaster again had my last chemo 28th of November still clear of follicular lymphoma without maintenance now what ,back to panic mode.
Thehighlander
Posted by

Jeanette, so for me I had a slightly different chemo but had most of the R-CHOP but going for the two Years maintenance was not an option as it would have not kept my condition under control and it would have came back and killed me off so this is why I spent the next 2+ years going through two Stem Cell Transplants and the recovery.

The maintenance is there for a a specific reason xx

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

johnr
Posted by

Hi Jeanette, I had aggressive NHL so did not have this decision to make, to help so countries have actually stopped offer the 2 year maintenance option as the research is in the long term it makes little difference to the stats for survival and relapse figures when averages are worked out. But as we always say were not stats we are individuals so what may benefit one person may not be the same for the next as you and your disease are unique to you. Over the years I have read many posts and to summarise most opt for maintenance as it offers a security blanket and reassurance against relapse. Some people do find the fatigue continues to be an issue, but again that could be the case following your initial treatment. 

Most receive the maintenance therapy via cutaneous injection which is much quick but a small number have a reaction - redness around the site of the injection and some have to go back to an IV drip but they are the minority. 

If you want to research look at the blood journal and or the ASH (American society of Haematologists) papers, they have 2 conferences per year and research papers are shared.

Hopefully those who have been down this road will share what the chose and why and how its been

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Jenko1979
Posted by

Hi Jeanette,

i would hope that you consultant could give you the best information for your individual circumstance.

personally, I will be going for the 2 year maintenance, mainly because this is what the clinical trials have been based on and also is what my consultant recommends for me.

i did find an article which when you look at the last sentence in the results paragraph did seem to suggest that remission times are far better following maintenance.

i agree, this benefit needs to be balanced against the side effects you are getting from rituximab 

https://scholar.google.co.uk/scholar?cluster=10373310957353065076&hl=en&oi=scholarr#d=gs_qabs&u=%23p%3DFQ7kZDpA_1cJ

Regards

Paul 

jeanette 49
Posted by

Thanks I read the web site and you are right ,so I’m going to give it a go ,they have said no injection of it going to put it through on drip,so  they can stop it if I have a reaction, so fingers crossed, thanks for all your help, will let you know how it goes and  will I joy the few weeks off till it starts end feb. Thanks for all your reply’s all ways helps me. Jean xxx

Jeanette 49 hi just a update went for my check up and still have fluid around right lung consultant said he doesn’t know why as I’m clear of follicular lymphoma at the moment it must be something else so I have now got to wait for appointment for ct scan and see chest consultant looks like back on the rollercoaster again had my last chemo 28th of November still clear of follicular lymphoma without maintenance now what ,back to panic mode.
jeanette 49
Posted by

Hi john thank you for your support they are going to give me it by drip not injection as they said it was better for me because of the reaction I have had when I was on r chop ,so I’m going to give it a go end of feb and see how I go hopefully no reaction then take it from there. Thanks again does help with people who have been their help, will update when I get the first one done.  Jean xxxxx

Jeanette 49 hi just a update went for my check up and still have fluid around right lung consultant said he doesn’t know why as I’m clear of follicular lymphoma at the moment it must be something else so I have now got to wait for appointment for ct scan and see chest consultant looks like back on the rollercoaster again had my last chemo 28th of November still clear of follicular lymphoma without maintenance now what ,back to panic mode.
jeanette 49
Posted by

Thanks highlander will go for it and hope no reaction this time just going to injoy my time with no hospital visits till I start end feb .hope you are better now take care many thanks . Jean xxxxx

Jeanette 49 hi just a update went for my check up and still have fluid around right lung consultant said he doesn’t know why as I’m clear of follicular lymphoma at the moment it must be something else so I have now got to wait for appointment for ct scan and see chest consultant looks like back on the rollercoaster again had my last chemo 28th of November still clear of follicular lymphoma without maintenance now what ,back to panic mode.
Peter1954
Posted by

Hello Jeanette,

I've not  had the same treatment as you as from what I understand its not suitable for me, I am (I hope) having one more chemo (1st Feb) then start maintenance 2 months later which for me is Obinutuzumab, I will be going through that as they think I need to. I wish you good luck with yours and hope that it helps keep you enjoying life.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

jeanette 49
Posted by

Thanks peter I wouldn’t have worried about having the maintenance I would have gone straight on it  the thing I was worried about was the bad reaction I’ve had on it the thought of two years of it was scary, but I’m going to try it and hope for the best I ask the consultant if their was any thing else I could have he said no only the R so if I have a reaction then stop sort of leaves you between a rock and hard place really ,but you don’t have any choice really,  good luck with your last chemo and hope the obinutuzumab works I will keep fingers crossed for you I wish you well keep smiling. Jean xxx

Jeanette 49 hi just a update went for my check up and still have fluid around right lung consultant said he doesn’t know why as I’m clear of follicular lymphoma at the moment it must be something else so I have now got to wait for appointment for ct scan and see chest consultant looks like back on the rollercoaster again had my last chemo 28th of November still clear of follicular lymphoma without maintenance now what ,back to panic mode.
Peter1954
Posted by

Hello Jeanette,

Yes the obinutuzumab  is far kinder I am told than rituxumab, something they said would have caused me a lot of problems bearing in mind my last chemo needed 5 years ago. As you say any problems with your maintenance and there are I imagine other things they can do.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln

Melbourne sh
Posted by

Hi Peter 

joined this group last year as my husband started treatment he had obintutuzumab and CVP. Treatment finished in late November and after a scan and tests he was confirmed as being in remission. He started his 2year maintenance of obintutuzumab (every 8 weeks approx) on 8 Jan and is having his 4 session Monday. Please to (say touch wood) all going well all bloods platelets etc all normal. I would say very little side effects. All based around the day of treatment. As we know everyone is different but I hope you find it the same.  We think the only lasting damage has been from vincristine which has left my husband with pins and needles in his feet and legs which become painful the more he on them. But his fitness levels are improving in leaps and bounds so a small thing and hopefully that will improve too. Good luck with your maintenance. 

Melbournesh

Peter1954
Posted by

Hello Melbourne sh,

I'm glad its going so well for your husband, bar the pins and needles, not sure how others cope with this but for me it doesn't stop me sleeping at night, I think I'm resigned to the pins and needles for a long time as I love walking which doesn't help as after an hour or so I can't feel the ground under my feet, I was offered tablets for it, but refused them as they are known to have side effects (sorry I can't remember the name and I never wrote it down   )

I've started as well to get more lumps that refuse to diminish in my right armpit and groin as well. I went to hospital this week for scans and am waiting for my biopsy appointment, which should be next week.

It'd be nic to hear of your husbands progress when you feel like it as he is the 1st I've come across on the same medication.

Peter

In the end, it's not the years in your life that count. It's the life in your years.  Abraham Lincoln