Just been diagnosed with follicUlar lymphoma stage 1/2, anyone on a similar journey?

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Just been diagnosed with follicUlar lymphoma stage 1/2, anyone on a similar journey? Whats next, or what was next for you? Seems i might need a bone marrow biopsy, whats that like? Sending hugs to u all x

  • Hi again  and good to hear that you now have your diagnosis.

    I don't have Follicular Lymphoma but was diagnosis way back in 1999 with another (rare) type of Low-grade non-Hodgkin lymphoma. Low Grade NHLs tend to be slow growing and often this will mean that you are put on Active Monitoring (Watch and Wait)..... I was basically on Active Monitoring for 14 years before I needed full on treatments.

    I have had many (BMBs) Bone marrow biopsy and on the whole they were not that painful, small sting when the local-anesthetic goes in and some pushing...... I have definitely had much worse experiences going to the dentist.

    The BMB will help your Consultant decide if it's time to treat....... the Staging in Lymphoma, unlike other cancers where the higher the stage number the worse the prognosis....... is used to identify where your FL is presenting, is treatment required, what is the best treatment and for how long...... remember I was stage 4 back in 2013 and I am talking with you today living a great life.

    Let's look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

    Always around to help more or just to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Cheers again Mike, i hoped you would have some info for me as your seem to be well informed! I am so pleased that i havent got pancreatic cancer!! As thats initially what they thought!! And thats why i have been under the biliary team and not a haematologist! I am now being referred to one. The 7.5cm tumour is a lymph node, and not at all in the pancreas! So bitter sweet pleased about that, but still have cancer, but hopefully treatable!! Really appreciate the help along the way mike, as u really need positivity, even if we are in a gloomy situation! Regards Donna x

  • Hi Donna, indeed a much much better route having FL than pancreatic cancer!!….. let’s look for your Heamatology appointment to come along quickly so this can be moved forward.

    The mind numbing thing about Lymphoma is it can’t be cut out (although surgery can be used if there is immediate risk to life) so it’s all down to chemo, targeted therapies, Radiotherapy and a few others.

    Be assured that once treatment starts it can be amazingly effective from the start.

    I will put this link up so you can start getting ready for that appointment Questions to ask your medical team about Lymphoma

    Always here to help out or listen to a rant ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks a lot for the heads up on haematology appt , might want a rant down the line lol! Felt really low and tearful over the last few months! Not like me at all, was convinced my end was near! But gonna get in fighting mode and get on with my life!! Been sad enough now!! Glad you were on this website, i needed the support, my family are great but dont really understand!!, keep doing what you do i really appreciate it hugs to you regards Donna x

  • Good morning Donna, the more you talk with people who have the ‘T’ shirt the more your brain will get some order and with this the noise between your ears will become more controllable.

    All the links I have given you are taken from 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...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey (I actually run one of the Scottish Online Groups)

    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 dedicated 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.

    Off down to Surrey today to see the 3 granddaughters for a few days Heart eyes


    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Cheers again mike, have a fab weekend with the grandbabies they do your heart good! I have 3 grandaughters, 2 grandsons and a great one due in march i need to LIVE!! Lol x

  • We received a great welcome. We only see the Surrey 3 (sounds like a gang) 4 or 5 times a year so we always make the most of our times together.

    We actually have 4 granddaughters with one living not far from us so she helps us deal with not seeing the others.

    Based on my and the experiences of many folks on here and on the Lymphoma Action platform… (remember I have a rare and had to treat Low Grade NHL) with lots of people with FL I am confident that you will have lots of time with your grandbabies.

    FL is one of the most common types of Low Grade NHL.

    …… so this brings the amazing g amount of reset h and developments of treatments that can be used to get this under control, do remember that like my Low Grade NHL, FL is incurable so it’s seen as a long term health condition but unlike lots of other long term health conditions there are treatments when required…….  unfortunately for other conditions this is not an option….. I have a few friends with Parkinson’s, MS…. and they have no light in the tunnel ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

    1. Lovely pic of the family Mike, is that you with them?  Nice to put a face to the name lol! Thanks to all your advice i am feeling much more positive now, i feel ready for the challenge!! Was pancreatic mass, and pancreatic tumour and tumour in the pancreas on my scan results that really put me off kilter!! And was told that radiologists were good at diagnosing!! Being sent to Biliary team! This all convinced me of the worst outcome!! I am so so lucky it isnt that!! So will get on with it now and come through the other side!! Xx 
  • Yes that’s me with the clan when we were all in York back n April. The problem with diagnosing Lymphoma is it needs a biopsy and until this is done it can often be mistaken for a solid tumour.

    I have talked with many people who have had surgery thinking that they had some type of solid tumour cancer only to be told later that it was actually lymphoma.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi spoons,

    I was diagnosed with the same result and had to go fo a bone marrow biopsy. I can say it's a unique experience if you have not already gone through with it. Make sure you have plenty of numbing agent the place your getting it. There can be a bit of blood and you will sense the needles doing their work, but it should be painless within reasonThumbsup

    It was a lump in my groin that grew to a small melon, but thankfully the 3 weeks of radio therepy helped to reduce it by half.

    I'm still trying to figure things out, as other complications have caused me to leave my job...so what's next? No idea..lol

    Walking my dog, being honest with myself and doing little projects around the house keeps me going...

    I hope your journey is a safe one... don't be afraid to say how you feel as bottling things up only leads to getting angry at the little things and hurt those who care..

    Be well