Hairy cell leukemia

  • 9 replies
  • 8 subscribers
  • 523 views

My husband has just been diagnosed with hairy cell leukemia. I'm in a bubble any one going through this 

  • Hi  and a warm welcome to this corner of the Community although I am always sorry to see folks joining usand to hear about your husband's diagnosis. I am Mike and I help out around our various Blood Cancer groups.

    I don’t have Hairy Cell Leukemia (HCL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

    We do have a dedicated group covering CLL, SLL, HCL this is because these types of blood cancers, although have the word Leukaemia in then, in Hematology terms, actually comes under the umbrella of Low-grade non-Hodgkin lymphoma - yes very confusing I hear you say.

    Do join the group and put up a post but the group is not very busy but there may be someone lurking in the background who will reply.

    Do also check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc and cover HCL (All the inks are tken from the Lymphoma Action site)

    Lymphoma Action run regular Support Platforms both for patients...... 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 the team will be on hand to give you some support - open every week day from 10 till 3.

    Do check out for a local Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups….. the one I attend does have a few folks with HCL in it so worth checking.

    Always around to help more or just to chat

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike thank you so much for your response. I'm looking for support. At the moment I'm in a bubble. I need time to accept and understand what's happening Pray 

  • Is your husband having treatment?

    Do have a look through the support platforms I have given you links for. Lymphoma Action do have telephone buddies to support Family and Carers.

    We also have our general Carers only support groups where you will connect with others navigating the same support challenges….. but this group covers every cancer type.

    Always around to help as best as I can ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • His treatment starts on 23rd October as he did not have his flu or covid jab done so they delayed it one week

    He will have injections in his stomach for 5 days and short stay in the day unit.i work full time but I need to organise work so I can be there for him.the consultant said the nurse would call us but we have not heard anything yet.so we don't know the times of the injections ..maybe the nurse will call us soon.im not sure

    But he is not a positive person that's why I need support because he always thinks negatively and I gey myself down.need positive people with positive mindset to help me carry on as normal as possible. 

    Hugs back to Mike stay strong 

  • if you have any phone numbers do use them just to keep the system working for you.

    Do you know the name of the treatment he is having?

    I have been on my journey for over 24 years with my rare, hard to treat blood cancer (see my story through the link below) and have had a lot of treatments over the years but I am now coming up to 8 years out from my last treatment, turning 68 next month and living a great life…… there is lots of hope.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Wow I read your story Mike that's amazing what you have got through..you are amazing 

  • Sorry for not getting back you but been at our daughters having some time with our granddaughter most of the day.

    We all do what needs to be done to get through the tunnel and out the other end….. thankfully not all journeys are as challenging as my one.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Ahh how lovely. That's quality time and precious memories for the family..keep doing what ur doing..its the best way to stay busy and positive. I just feel like wanting to keep talking to someone. I need to find to find a support group where I can talk to people in similar situation and share my thoughts and worries. Like I love people and talking it makes me feel good..so I'm going to ask a nurse on macmillan where I can meet and talk with people..

    Levante 

  • Yes it’s great that we have one of our 4 granddaughters live local to us. The other three live way down there n Surrey so only see them a few times a year but they are arriving next Friday and we will have them for 5 nights while mum and dad are having a trip over to the western isles.

    Talking can help a lot so do heck to see if you have any Local Macmillan Support in your area and also check the Lymphoma Action as well as the Maggies Centre Links.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge