Hi...New Here. Diagnosed Last Week

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Hello Everyone, 

Very new here, I am Raenbow, or Rae for short.

I hope you are all doing as well as you can..I was diagnosed last week with Stage 3b Follicular Lymphoma..

I am due to start Chemo in 1 - 2 weeks time...Im only 33 years old and I guess I'm rather scared for the future.  I have had to stop my Uni course as I was training to be a Mental Health Therapist and now have had to deger till September next year. 

I'm really not sure how to feel, especially knowing I'll go through Chemo only for this to relapse again somewhere down the line... I feel like I've been given a life sentence. 

I have my appointment with my Heamatoligist on Monday where she will tell me what Treatment has been decided. 

Im all over the place. My life feels like its turned 180 in the space of a week  :( 

~Rae

  • Hi Rae  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us and to hear about your FL diagnosis.

    I am Mike and I help out around our various Lymphoma groups. I don’t have Follicular Lymphoma but I was diagnosed way back in 1999 aged 43 with another type of incurable but treatable although very rate type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    It takes time to get your head round the fact that you have a life long, incurable but very treatable condition. Over my many years I have talked with lots of folks with FL who have lived ‘with’ their Low-grade non-Hodgkin lymphoma and yes they have had various treatments but have lived a normal life ‘with’ it.

    This link Questions to ask your medical team about Lymphoma will help you ensure you are getting all the information you need to get the noise between your ears sorted.

    This other link Top Tips for the day of your Chemotherapy will help you get ready for treatment. You can see from my story that I had some very aggressive treatments including 6 cycles of chemo (R-EPOCH) with me in hospital 6 days/5 nights on my two IV pumps 24/7 for over 120hrs per cycle…… and honestly I had no real problems, yes I lost my hair but the chemo did what it had to do.

    You will have lots of questions so ask away and we will answer as best as we can ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike 

    Thank you so much for your reply. I am sorry to hear about the battle you have gone through.

    Thank you for the links they have been very helpful. 

    My Heamatologist said that Im very young to get NHL and that its quite rare for someone my age to have it. Does anyone else have the same here?,

    ~Rae

  • Hi Rae, it’s ‘less likely’ for someone to get FL in their 30s…… but this is not the case for NHL in general.

    There are a few folks your age post a in our General Non Hodgkin's Lymphoma group so do have a look in the group.

    We have a General NHL group as there is in fact over 60 types and sub-types of Lymphoma of Lymphoma - yes that crazy so we can’t have a group for every type.

    I think you need to widen your support base so do check out the Lymphoma Action website.

    Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Online Support Groups with one specifically for Young adults (18 to 35) - third Monday of the month at 7pm. I highly recommend this group 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.

    I am also volunteer with Lymphoma Action on their various support platforms and there are actually a lot of people under 40 use the platforms…… with a good number in their teens….. age is no barrier to Lymphoma.

    Do you know the name of the chemo you are having?

    Always around to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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