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Im looking to talk to someone else with polycycthemia vera.

32 Male just diagnosed with PV. Will be beginning treatment shortly (just venesections and aspirin for now). I have really frustrated feelings at the moment. On the one hand getting a diagnosis of a rare cancer makes me upset but given the straight forward nature of the treatment and largely unaffected life expectancy ( when treated) I dont feel like I have any right to complain.

Hi, I'm going into my 3rd round of Chemo (RChop) for Non Hodgkins Lymphoma and I have been extremely sick after my last two. I had to get admitted back into hospital the last time. Has anyone else experienced sickness like this?? im aware it's a side effect but it horrendous for me!! Thanks.

I successfully finished treatment for Stage 3 Hodgkins Lymphoma in December 2020. Not long after my treatment began I noticed a decline in my cognitive ability. To this day I still have issues with fatigue, memory loss, inability to focus for long periods of time, executive dysfunction and heightened anxiety. This is life altering for me and impacts on every aspect of my life, but no one seems to be taking it seriously. I was told it would improve a few months after I finished chemo. It has not really improved at all beyond my energy levels improving a bit. There seem to be no resources available and very little research done. I found one study from 2020 in relation to this and the results indicated that up to a third of HL Survivors deal with long term cognitive issues after treatment. As this is a cancer that effects a lot of young people the effects over a lifetime can be extreme. Why is no one talking about this? I read another study about the impact of reduced estrogen on dopamine levels in the brain as well. It indicated that a reduction in estrogen for more than 10 days can permanently impact our ability to produce and regulate dopamine...which directly impacts executive function, memory, focus etc. Why is this not being discussed with female patients? Someone telling me to use a planner/diary, write stuff down and that I just have to make myself do things is unhelpful. It is insulting! This goes far beyond what such unhelpful advice can remedy. I have mentioned my problems to my oncologist at every single follow up appointment and there is no help being offered to me? Have ADHD drugs ever been used to help people in this country with long term chemo brain? I read a study from the US where they had some success with this. Why is this not being adopted here? Why is this crippling side effect being dismissed as not important. It has ruined my life. Has anyone had any success with getting help for this?

Hello, This is my first time posting. I had a biopsy done just over 3 weeks ago and the consultants secretary has asked me to come in this Friday for results. I wasn't advised to bring a friend with me for results. Is this generally a positive sign or could I potentially still receive bad news? This whole journey for me started in early June. The waiting for appointments, biopsy, results etc has been incredibly stressful. Any guidance you can give would be greatly appreciated. Thank you.

Hello I was diagnosed with a blood cancer this year and I'm due to start treatment at the end of the year. I haven't received any information about the booster vaccine and when I asked in St James I genuinely didn't understand the answer. Does anyone know if people with blood cancers fall under the bracket of immunocompromised and should we expect to be offered the third vaccine? Thanks David

I am thinking of getting my first house after the summer and havent taken any steps yet but was wondering where i stand on getting a mortgage after having a successful bonemarrow transplant after Luekemia only a year ago. From what I gather there is a cap on the amount you can borrow but i am uncertain. Does anyone have any experience in this. cheers

Hi, the last couple of months I’ve had a lump below my left breast over my lower rib. It’s not painful but I do have some discomfort on that side. Also experiencing mild nausea especially when I eat plus periodic sweats and itchy feet, especially at night. I know some of these could be symptoms of lymphoma but km wondering would that be a normal location for it to be? Do you think it warrants a doctor visit? I don’t want to go along being dranatic but this thing is not going away plus I’m struggling a lot with fatigue. I keep Blaming that that on my underactive thyroid but I’m not sure that’s it now. Just wondering others thoughts? Thanks in advance

Are you living with a diagnosis of chronic lymphocytic leukaemia (CLL) and on the ‘watch & wait’ protocol for at least 2 years? Would you be willing to share your experience in a telephone interview? Cancer researchers at the National University of Ireland Galway are seeking participants to take part in a 30 minute telephone interview.  If you are interested in participating and would like to receive more information, please email c.dunnion.1@nuigalway.ie or phone 085 236 1365.

Hi. I am waiting to have a Stem Cell Transplant. Using my own stem cells. I would like to get some advice from someone who has had this type of transplant. I have Myeloma Thank you.