Watch and wait or Rituximab? Newly diagnosed

Hi, it was my husband that was diagnosed in 2008 with non-hodgkins lymphoma and he was offered watch and wait with one consultant and rituxamab via canula (not injections).  He couldnt psychologically watch and wait and wanted it treated asap.  His lymphoma prsented with a lump in his groin and mass in abdomen.  End result was good after ritux, maintenance ritux and then eschap (another stronger chemo) followed finally by a stem cell transplant in 2011.  Which has him cancer free. You have to remember that no two people are the same and many people have excellent results with the chemos these days and end up in long term remission lasting years. Try not to get too caught up in who had what and their end results. Many people also just watch and wait it is entirely up to you and your doctors. Julia 

I assume its follicular Lymphoma?

Well It’s nice to have a choice.

Still trying to get that myself.

Is it induction therapy they are offering?

In terms of overall survival, the Jury is still out.

If you get a good response to rituximab they may be able to use it again on its own for a second treatment.

Avoiding chemo till later.

You will be on watch and wait after treatment.

I have done 6 years myself apparently, some have done 10 with stage 3 or 4 but they are not very active on the forums.

As in not at all.

Maybe they just like to keep it to themselves?

Good luck.

Hi,

I was diagnosed in April this year with low grade follicular lymphoma and my diagnosis sounds very similar to yours.  I was initially told that I would be on watch and wait.  I was then asked whether I had health insurance, which I do and then I was offered rituximab treatment, four weeks , once a week, followed by 2 years maintenance.  I am now just about to have my second maintenance.  It was a bit of a no brainer for me.  My anxiety levels were sky high and doing something has helped me.  I'm not as young as you are, but I'm only 54 and I'm hoping that the treatment gives me a good outcome and puts me in remission for a long time.  Before making the decision I read the literature, spoke to someone who had the same treatment and asked loads of questions, including whether rituximab could be used again, to which the answer was yes.  I had a slight reaction the first time I received rituximab, but they just slowed the infusion down and I haven't had any reaction since apart from localised soreness and redness following the first maintenance injection which wore off after about a week.  I haven't had any other problems since starting the treatment, although everyone reacts differently.

The downsides are - having had normal blood test results before starting the treatment they have deteriorated but not to the extent that my doctor is worried.  I do worry a lot about catching things, touch wood so far I haven't and my neutrophil levels are still over two.  I use a lot of antibacterial hand gel and try and keep away from people who are ill.  This is made more complicated by the fact that I haven't told my family and friends about my diagnosis, of course my husband knows but I didn't want to worry my 3 children unnecessarily when I am not experiencing any symptoms and my life isn't in danger.  Also travel insurance is more expensive when you are on treatment.

My CT scan after the four week cycle showed that I am now in radiological remission, meaning that my lymph nodes have reduced to a size the radiologist says he is not worried about, so I feel I have made the right decision.

Incidentally, NICE have now recommended the use of Rituximab as a mono therapy for people who have low tumour burden follicular NHL.  They recommend the first 4 weeks of treatment but not the 2 years maintenance, but research has shown that the outcomes are not that different.  Whether this recommendation will result in the NHS using this treatment instead of watch and wait remains to be seen.

Don't forget everyone reacts differently to Rituximab both with side effects and how effective it is.  I think it doesn't work for around 10%.  Good luck, I hope you make the right decision for you and wish you all the best in the future

Thank you everyone for taking the time to reply, my appointment last week went in a bit of a blur.  Mainly due to relief of knowing that I was being offered treatment.  My mum passed away from breast cancer at my age and my children are similar ages to that of my brothers when she died.  This had a great bearing on my mental state especially as she passed away 2 weeks after being diagnosed. Your replies have helped my state of mind. I am going tomorrow with a list of questions to aid my decision making. Feeling a bit confused at the moment but more positive. 

Hi Lindylou

Just sending you a hug. I was diagnosed with MALT non hodgkinson lymphoma in May. I had a skin lymphoma on my forehead and it was removed followed by 12 sessions of radiotherapy. I had a CT scan and bone marrow test done in June and they were clear. I'm back at the hospital in January and I've got some groin pain that I want checking out. I also lost my mom from breast cancer. Both my parents passed in 1985. My mom was my age and my dad passed from pneumonia a month later. I have no other family apart from my husband.

Its very difficult dealing with this diagnosis and especially so if you've lost a parent at a similar age. All things go through your mind. I often think of my mom towards the end of her life and it was an awful time that I will never forget. Christmas is a hard time for me as my parents died in the November and December time and also my grandmother passed days before Christmas. Also my moms birthday was Christmas Eve, so Christmas is a very difficult time.

I can understand your confusion, but please remember there is alot of support out there and also alot of us on the forum. Please remember you are not alone we are all with you.

Take care

Love

Laura

x 

I was diagnosed with follicular lymphoma 3 1/2 years ago while pathology was being looked at for another cancer.

 I was on watch-and-wait from then until this Sept. CT and PET/CT scans in the summer showed it was now widespread not only in lymphnodes but also in my spleen, liver, and lungs. I had another Pet scan following 4 treatments of Rituxan. Although not all gone, the results showed I responded very well to the treatments and lots of it was gone. I am now having R maintenance every 3 months.

I really had few symptoms even when it was widespread. I think watch-and-wait is fine as long as regular check-ups and occasional scans are done.

Hi just thought I would give an update, I opted for the Rituximab treatment which i started yesterday.  I had a slight allergic reaction so they slowed the infusion down.  I feel a little tired but otherwise all ok.  Back again next week for another dose,and for the next 3 weeks.  I am hoping all being well I can continue to go to work during my treatment. 

Thanks for letting us know and good luck with your treatment.

Hi I'm new to this site I was just diagnosed with low grade non Hodgkin's follicular lyphoma I was just wondering I know this post is old but if you are still with this site could you tell me how well rituxmab has done for you I'm supposed to start it next week and I'm really scared i have had to be on antibiotics this week and I wonder if that will cause problem. Thank you