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Hello everyone Today is my first day on the forum, I have recently been diagnosed with Myelofybrosis, I have just started treatment today to help with symptoms, unfortunately there is no cure so it’s taking me some time to process and come to terms with my diagnosis and the life limiting aspect of this rare blood cancer I am a mum to a lovely 12 year old boy and if I’m being honest not being here for him is what terrifies me the most, I feel really scared and isolated as I don’t want to share my fears with my husband, family or friends most of whom I’ve not told yet. I’ve registered on the blood cancer.org site but haven’t found anyone to connect with yet that has the same cancer as me, finding someone else who has experience in this cancer and the treatment Ruxotilinib would be invaluable but I would also be grateful for anyone’s feedback who may have a different cancer but can understand this overwhelmIng fear at the start, it’s also challenging for my husband and I at the moment to accept this as we have just lost my mother in law in the last two weeks to cervical cancer after a short and aggresve battle with her illness Reaching out in hope of some friendly advice x

Naugus 7 months ago

Hello Mrs S

Naugus 7 months ago

Hello Mrs S,

I also have myelofibrosis or MF. Was diagnosed 2020. Then 79, I was not eligible for a stem cell transfer SCT the only cure. I can tell you are much younger and could quailfy. You need a specialist for MPNs myeloneoplasms. There is a Dr at Guys, a woman, who specializes in MPNs.. For four years I have been in a watch and wait mode. Five days ago I began taking the Ruxolitinib aka Jafaki. Hopefully it will shrink the spleen, lower the raging WBC without lower the HGB, a negative side effect of the drug. From another group I also belong to for MF there is a lot of valuable information.
You mentioned symptoms, I have learnt they generally are, night sweats, bone pain, itching, and fatigue. If you have experienced any of these the Ruxolitinib will help.

Happy to keep in touch,

Naugus

Thehighlander 7 months ago

Hi again MrsS831 and well done navigating across to the group.

As I said in your post in the New to Community group I have lived with and been treated for a different rare incurable blood cancer for over 24 years.

You may want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with Myelofibrosis in it so worth checking.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Mumskaya 7 months ago

Hello

I was diagnosed with Myelofibrosis 18 months ago and was in a lot of pain with a very enlarged spleen. I have now been on Ruxolitinib for about 8 months and a cocktail morphine and paracetamol. At last the pain is under control and even though I’m unable to be as active as I used to be life is a lot brighter.

I am a lot older than you, I imagine, so am not suitable for a bone marrow transplant but as Naugus said it is worth following up for you.

There are new drugs coming out all the time which they are still doing trials on so don’t lose hope. If you feel you can share your worries with others especially your family as I’m sure they will want to support you in every way they can.

I’m sorry about your recent loss it is a lot to cope with all at once.

Tricia

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