Follicular lymphoma, please help!

Hi Marina,

I'm sorry to hear about your husband and also that you haven't had a reply yet. This is quite a new group and may not have many member yet. You could always copy and paste your post to hte main NHL group.  

This isn't a cancer I know about but hopefully someone who does will see your post and reply. 

Your feelings of being worried and depressed are very normal and if you need some support for your self have a look at the Carers Only group - it may help you feel less alone and more understood.

if you are researching information try and stay on sites like this and Cancer Research UK. There is lots of out of date and inaccurate information that can be scary reading.

You can also phone the macmillan support line and ask to speak to one of the nurses who may be able to answer your questions.  

I wish your husband luck with his treatment - I hope he responds really well, 

Hiloa x

Hello Marina,

Dear Hiloa has given you excellent advice already, but I can add this, the Lymphoma Association have really good leaflets, advice on the phone and a Buddy scheme too. It's a small charity so they haven't the resources of Macmillan, but it's just a free call away, 0808 808 5555. 

Like Hiloa, i hope your husband responds well to the chemo and reaches a long lasting remission. 

Hugs xxx

Hi Marina

I think what you are experiencing on the worry front is very normal.  The advice you have been given is very good and speaking to someone in the know will help.

I had/have stage 3b follicular lymphoma and had 6 RCHOP's and am now on Rituximab maintenance, a top up of the drug every 8 weeks for two years to hopefully keep it all asleep .  I knew nothing about lymphoma before and it was a huge whirlwind journey in the beginning.  The RCHOP obliterated 98 - 99% of it (one in the roof of my mouth, a large one in my stomach and in my bones) and the remaining 1 - 2% is now asleep.  My understanding is that it will wake up one day and there are many treatments available for me when the time comes.  However, who knows with the advances in medicine by that time there may be a cure.  

Your husband is still very early in the journey and for me there came a time when acceptance kicked in and I am now back at work and living from one scan to another.  Here, I am now on six monthly scans.  I no longer wait to do things in life, just go for it.  The doctors treat it as a chronic disease that can be managed.  

Finding support for yourself would be a good idea :).

Very best wishes  San x

Hi Marina

I was just going to send you a message when San's arrived and she has said everything that I wanted to say much more clearly than I could so I will start by saying a big  'Amen' to her post!

My journey is not dissimilar to hers - I was diagnosed with Stage 4 Grade 3a Follicular lymphoma in 2010 and had 8 cycles of R-CVP, which is basically  R-CHOP without the 'H' drug. It zapped all but a tiny bit which has been asleep, as San puts it, for nearly 3 years. I've just finished the maintenance treatment with rituximab - I had 2.5 years of it because I had a diversion on the way when I seemed to have relapsed but actually had developed some other problems with my immune system.  I've worked all the way through and although I run out of steam quickly (mainly due to the other issues) things are going well.  As San says the advances in understanding and treating follicular lymphoma are really amazing and the outlook is getting brighter all the time.  There are new arrows being added into the  quiver all the time to deal with any relapses. 

Now that your husband's lymphoma has been found he will always have regular checkups - my doctor said "it doesn't matter how well you are feeling we are going to keep looking after you" and I found that really reassuring!  He also said that he has people coming to clinic for years without any relapse. 

I also found it helpful to understand that lymphoma is caused by our own antibody cells getting confused and going off in large numbers to fight an enemy that isn't there.  They are trying to do the job they are supposed to but aren't because their wires have got crossed .  That helped me to not feel so anxious about it all - still have my moments, but most of the time I know I'm in the best hands and just enjoy life!

It's a challenging journey having lymphoma but I think it's just as hard, if not even harder in many ways for our family, especially spouses/partners as there's that feeling of wanting to make things better but being unable to,  It's so hard when someone you love is going through hard times...harder than if you are going through it yourself. And you can feel a bit invisible -  I know from my experience that everyone asks how I am but only as an afterthought do they ask John, my husband, how he is.   You have a huge part to play in accompanying and supporting your husband on this road  - I always call John my sherpa as he carries the load - but do take time to look after yourself,  do nice things and talk to people that know how you feel  e.g. in the forums for carers only on this site. 

Wishing you and your husband well in all senses of the word!

Kate

Hello again, Marina,

An auto SCT is best done from a complete remission, if that isn't possible, then an allo SCT is possibly the better option, that is probably why they changed to talk about an allo. If there are matched siblings then the transplant may be even easier than with a close unrelated match. 

Hoping that this isn't needed though….hugs xxx

Hello marina Im also 36 years old 

I have follicular lymphoma stage 1, my treatment start 2 days ago, first of all radiotherapy 18 times after that 2 years rituximab treatment. Iam from turkey and very good doctors in Turkey. If I was 4.stage lymphoma they'd give me chemo r chop treatment.

I hope your husband be fine and Never come back again 

Hi again , this thread is over 5 years old now so there is a good chance that the folks have moved on. I did give you a reply on your first post.