Newly diagnosed

Hi again Rosyboat and well done navigating across to our corner of the community.

Yes there are over 60 types and subtypes of Lymphoma all with their different challenges and often requiring diffrent treatment.

I was diagnosed back in 1999 with a rather rare, incurable type of NHL but I am pleased to say that regardless of the years of treatments and multiple relapses I am still here doing great (hit my community name for my story)

There are a few members with Extranodal marginal zone lymphoma (also called MALT lymphoma) so let’s look for them to pick up on your post.

As for having rituximab, this is classed as a Monoclonal antibody therapy (not chemotherapy) and is a very effective treatment, yes you may well lose your hair but this for me was reassuring that if it could remove my hair it can remove my growth area……. and the good thing is your hair will grow back.

I had Rituximab as part of my intensive chemo (R-EPOCH) and I actually did ok with my 6 cycles and it did the job that had to be done.

You will read about the various Side Effects of Treatments but honestly many people just don’t have a bad experience - take each day as it comes and look for things to go well.

You may find this link helpful as you get ready for your treatment Top Tips for the day of your Chemotherapy

I always highlight the Lymphoma Action website. The Bold link above are taken for the site.

Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups for patients with a few groups specifically for Family and Carers...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey. They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Always around to chat and answer questions as best as I can.

It would be unusual to lose the hair with rituximab. I've done chemo with ritux twice and now doing ritux every 12 weeks as maintenance. No loss of hair with the second rounds of chemo or ritux so I really wouldn't worry about it. Ritux on its own makes me tired which I believe is common. It also gives me stomach issues which I believe is far less common. It's common to have a reaction during the first treatment. I got itchy hives and they stopped it and gave me something and then continued. I've had no problem with later infusions. Good luck.

Ah thanks, that’s put my mind at rest!