My consultant wants me to go on interferon pegesy and i saw all side effects bit worrying how do you feel on it …i also take fedratinib 300mg a day plus epo injection once a week
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Hello Cake50 i have myelofibrosis for the last 2 years been on ruxolitinib then fedratinib and now my consultant wants me to go onto interferon how are you with interferon it worries me slightly
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From someone who’s been on interferon for 2 years with a gap inbetween.
First time round, after the first injection where I had a spike in temp and flu like symptoms which lasted 36hrs absolutely no side effects and levels were stable.
Second round, the flu like symptoms are maybe more prominent but again only day after.
I know the side effects sound scary and know that they have to put how and what people who were trialled it had but everyone is different!
But I’m happy being on it as everything else though not been tried seems scary!
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Hi I’ve had ME/CFS for 40 years which as you can imagine has impacted my life somewhat. 
I have felt particularly unwell over the last 21 months and had several investigations. Finally after saying (bravely and a bit embarrassed) to my GP that I was worried that I might have Multiple Myeloma he took me seriously when I explained my reasoning and that a couple of support workers on the MM website said it would be reasonable to say this to GP. Thank you support website! . I’m now waiting for a haematology appt - fast route - because of above reference Lymphocytes - apparently the reading has been above reference for 6 years. I like to be informed and am better with clear information. Am also grateful for support and advice - let’s see what happens on the 9th August. I’m keeping an open mind but am a bit emotional rather than worried. Just hoping for a listening Consultant.
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I am impressed with your bravery @BiffBoff and it worked.
Perhaps write down all your questions that you would like answers too beforehand.
Being a bit emotional sounds natural to me, my emotions have been on high alert since my diagnosis.
Yes let’s hope that you have a good rapport with and a listening consultant.
Please let us know how you get on and perhaps be just as brave again, it worked last time.
Look after and be kind to yourself
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Wow @BiffBoff . It can be so hard to bring things with your GP as things are so often dismissed. It sounds like you have a fantastic GP who has got things moving for you.
Of course you feel emotional - anybody would.
Everything crossed that you get a listening consultant, if not, try that bravery again.
Have you got somebody coming to the appointment with you?
We are all here for you so please keep posting. Often waiting is the most difficult part so use the forum for support and remember the support line is there if you need it.
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Thank you Erica - I’m glad I found you all today.
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Hi Nichola, Thanks. My daughter in law is coming - she’s a midwife so very comfortable in hospitals - I am too usually! My husband is a great practical support - ‘nuff said. 
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Sounds like you have really good support around you X
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Hi,
I’m Joy and I’m 66 years old and have always been very active and healthy. I have been a blood donor for over 30 years and gave blood in Dec '22 with no problems. In Feb this year I had a routine health check which showed I was anaemic. Repeat blood tests showed this was getting worse and I had a bone marrow biopsy in May which showed I have ALL. I had my first round of chemo in June (28 days of tablets) with no side effects.
When I had the second bone marrow biopsy it showed there had been absolutely no change. I’m now about to finish my second round of chemo, this time two 3day bouts over a total of 17 days. Again, I have had absolutely no side effects and am worrying this may also have had no effect. I know I have to stay positive for the next 2 weeks but it’s really hard some days.
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Hi @JoyLA, thank you so much for sharing what you’ve been going through. It’s so understandable to be feeling worried and I’m sure you’re not alone in this feeling. Please don’t hesitate to get in touch with our Support Team if you’d find it useful to talk things over with us (0808 2080 888 or support@bloodcancer.org.uk). Take good care of yourself.
Best wishes,
Tanya.
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Hi @JoyLA thanks for letting us know what you have been going through.
I think it is natural to have some very hard days emotionally, I think it is really important to acknowledge that, I oscillate between being positive one day and having several hard days where I could burst into tears at the least thing and my mind is really negative and the ‘what if’s’ set in.
You have been on a whirlwind in the last 6 mths. You have had a lot going on medically, emotionally, physically and practically and I that takes it out of you.
Be kind to yourself and please keep posting.
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Hi @Erica @MissB @Duncan ,
I had my appointment this morning to get my test results. The results were negative so I was offered a watch and wait or bone marrow biopsy as next steps. My platelets are only just over the range but in January they were at 602 so dr still thinks somethings going on but cannot diagnose at this stage. I opted for watch and wait so will have a repeat blood test in 6 months. I’m relieved but still feel a bit in limbo. Has anyone else experienced this before diagnosis was made? He did say I could start aspirin but there is a risk of an ulcer so he would recommend waiting. Hope you are all keeping well
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Hi @Nickijc thanks for letting us know and sorry you still feel in limbo.
I think many of us feel in limbo on watch and wait, but I feel so lucky to have been on it for the last 19 yrs. However I still get anxious before, during and after tests, results and appointments.
I have never had a bone marrow biopsy or taken aspirin.
Don’t forget watch and wait is also called active monitoring, which it actually is.
I hope others will share their experiences,
Be kind to yourself and please keep posting
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Hi Erica,
Thank you for your reply. Have you had a diagnosis? If so, can I ask what type of blood cancer you have been diagnosed with? It’s so reassuring to hear you haven’t needed anything other than monitoring for 19 years. Do you have any symptons at all? X
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Hi @Nickijc sorry I should have said I have Chronic lymphocytic leukaemia (CLL).
As for symptoms I manage my fatigue and tiredness on a daily basis, my internal thermostat doesn’t work and I get hot when I should feel cold and visa versa and night sweats, weight loss, unexplained bruising or bleeding and enlarged lymph nodes.
Any other questions please ask xx
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Wow Erica, that’s a lot to deal with. How do you manage? Is there no treatment for Chronic lymphocytic leukaemia (CLL)? Was you diagnosed through blood tests? Sorry for asking loads of questions. X
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Hi @Nickijc. It can be tough just waiting but active monitoring is a treatment in itself - however, it’s a tough one to comprehend.
I Initially had an op and radiotherapy for follicular lymphoma but have also been on active monitoring for six years. I did have a bone marrow biopsy but that was after diagnosis - not before.
I completely understand you feel in limbo but am glad that they are keeping a regular check on you. If you are worried of have more questions don’t hesitate to contact your medical team.
Take good care of yourself and keep us updated on how you are doing
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Hi @Nickijc there are quite a few treatments for Chronic lymphocytic leukaemia (CLL) but I am quite happy to be on watch and wait, long may it last.
I had a gynaecological op and recovered medically, but had several symptoms. The gynaecologist did blood tests and said to me I have never had to tell anyone this before but you have Chronic lymphocytic leukaemia (CLL), I cannot do any more for you, go and see your GP.
I therefore thought the end was imminent.
I have a better quality of life now than I ever had as my diagnosis gave me the opportunity to look at my life and what I want out of it and with whom.
I have learnt to say NO after a good half a century.
I have worked hard on my fitness and I am fitter now than I have ever been. At diagnosis I could hardly walk any distance and now I can walk 10+ mls.
I am a Pilates girl as I have a curvature of the spine and osteoporosis.
My 70th birthday, just before Covid, was my best birthday ever.
I manage my symptoms on a daily basis and I understand that I do not deal with what personally stresses me well and that I also get fatigued by overdoing it emotionally, medically, physically, psychologically and practically.
Look after yourself
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You are an inspiration to us all @Erica . You sound like such a strong ,determined person and I am so grateful to you for sharing your story and for the support you have given me.
Keep up the positivity and take care! Xxx
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