BMB- Bone Scarring

[Afya23]

Hello today was my first meeting with my MPN Specialist , It went all fine.

Unfortunately it’s been reported that there’s low risk scarring noted on my BMB.

Thou heartbroken, I am glad I requested my Local Haematologist to do it before I started IFN injections. The Dr told me not to worry about as I am on treatment and we will continue monitoring my symptoms.

Although she said they can’t classify this a myelofibrosis as low , it’s evidently clear there’s been disease progression and I can’t stop worrying. I have had symptoms for over 4 years but recently diagnosed.

Anyone else going through the same ?😭

[Anag]

Dear Afya,

I know that this is worrying for you. You may need some time to calm yourself, but it is crucial in Amy illness to be rid of negative emotions because they drive illness. The worrying will not change anything. The first thing I would do would be to get to an MPN specialist and make sure that I get more clear information and a treatment plan going (also regarding anti inflammatory diet, toxins reduction in home and food, etc) to help the body in general.

You are really young and because of this, perhaps you can get on Besremi?

Please concentrate on the quality of your life! This will help you live a long, healthy one. 🙂

God bless, Anag

[Afya23 in reply to Anag]

Hi Anag

Thanks for your advice. Trying not to let the news dampen my spirits as I am still processing everything. I was doing well since I started the interferon. My mind went blank so I am meeting the Doctor again in 4 weeks and will hopefully as more questions including the besremi option and chart way forward. I will also try contact Maz . I could do with a buddy right now .Thanks once again.

[Anag in reply to Afya23]

I try to help as much as I can. Feel loved here in this forum! We’re a great group! Study about your illness and about ways to get yourself well. Start making changes slowly. The tortoise wins, not the hare! 😉 all the best!

[Wyebird]

hi, Anag has given you good advise.

In addition I always used to worry about money so if you have a mortgage I would chip away at it and plan for the future incase you need to reduce your hours at work in the distant future.

Meanwhile, Medication has improved significantly, so embrace life don’t worry it away. Get in touch with Maz at MPNvoice.org.Uk she will team you up with a buddy of similar age and circumstance.

Good luck

[Afya23 in reply to Wyebird]

Hey Wyebird

Thanks for taking time to respond. Trying not to worry about it but thought was just picking myself up again. I could barely function /work with the fatigue for last few months and that’s why I insisted on BMB. My work very physical and long hours and long term might have to change my career.

I will try contact Maz for a buddy too. Thanks once again

[Wyebird in reply to Afya23]

find short cuts in your life do the bare minimum around the house. Keep your energy for fun things. If people come round for dinner serve pizza a salad. It’s you they want to see. Take care xx

[Afya23 in reply to Wyebird]

😂 😂😂 pizza salad it is ! I agree with you. I am doing minimal . Thanks once again .

[hunter5582]

Some level of low-level scarring can be found in people with MPNs. Suggest you focus on the "low-risk" part of the marrow assessment. You have initiated one of the treatments that is shown to reduce risk of progression. In fact some MPN Specialists have noted this finding. "Interferon has even been shown to reverse bone marrow fibrosis in some patients with MF." silvermpncenter.weill.corne.... That is not a guarantee, but it is a hopeful finding.

There are more things you an do to improve your odds. Reducing systemic inflammation may reduce risk of progression and certainly makes you feel better. Staying active and engaged in the things you love to do is also important.

As noted above, pizza can also help. You may need to engage in extensive study of the various types of pizza to ensure you find the optimal pizza dosing for your situation. Margarita pizza, various veggie and meat pizzas, Taco pizza, White pizza, BBQ chicken pizza with grilled veggies, Greek Pizza (spinach and feta), Goat cheese pizza - and so many more. When considering pizza dosing, this research is vital (and tasty).

Wishing you all the best.

[Afya23 in reply to hunter5582]

Hi Hunter

Thanks for your response. Very humorous too 😂. Was so scared after the news but recovered now . Looking forward this journey. The article is informative too. Thanks once again

[MAP44]

Hi Afya23

Most of us had symptoms for many years before being diagnosed. Stop the worrying and get on with life. Adjust your food, your support, your sleep time. Learning how to relax with yoga, meditation or deep breathing. Get busy moving your body, walking or running or swimming whatever movement you prefer. Now is the time to prioritize YOU and start enjoying life again.

Congratulations on visiting an MPN specialist. You are off to a great start in your self care. Keep going 🌸🌺🌼

[Afya23 in reply to MAP44]

Thanks Map44

Your advice is incredibly appreciated.

I am out of the dark hole now. Keep on keeping on!

[monarch5000]

Hope:

.

[MAP44 in reply to monarch5000]

Well that’s what my MPN Specialist told me and since it fits in with my plans for living a long life, I agree with this article and plan on proving it true.❤️❤️.

Nice to see something written about PV that doesn’t say maximum 10yrs after diagnosis and all that garbage. 🌼🌸🌺

[Afya23 in reply to monarch5000]

Hi Monarch

Thanks for the article. It’s reassuring. Lots of garbage with this life expectancy. There’s definitely hope.

[katiewalsh]

Hi. I was diagnosed with MF, slight scaring (fibrosis)/low risk, in 2014. I think I’d had it for a few years. Anyhow, here we are 9 years later and there’s no evidence in my blood work of it getting worse. Try not to worry but do get am MPN specialist involved in your care if possible. It can make a big difference in the quality of treatment you’ll receive. Btw, pizza is allowed even when you don’t have company. I actually prepared a list of easy to prepare meals-many come frozen. Katie

[Afya23 in reply to katiewalsh]

Hi Katie ,

Thanks for sharing your story with me. I have dragged myself out of the hole now. Looking forward what the future holds. I have recently transferred my care to a new MPN Specialist and she has explained in depth of my treatment moving forward. Looking forward many pizza days ahead too 😋.

[Reggieroo]

I have just had the same progression. I’ve just had a BMB and been told there’s scarring but no mention of Myelofibrosis…. I will have a conversation with the team about that soon.

I was on Anagrelide and have been taken off it for six weeks and then I will start pegalated interferon!

I’m still processing it all.

[Afya23 in reply to Reggieroo]

Hello Reggieroo

Sorry to hear about your progression too. It’s unsettling and exhausting to process everything to say the least but there’s hope for us . I am doing well with pegasys . All the best with starting your treatment.

Thanks

[Reggieroo in reply to Afya23]

Hi Afya

Thanks for replying. I’m pleased Pegasys is working for you. I’m just on the cusp of changing treatment as the hydroxy seems to have run its course for me but I want to make sure I have the right option for me. I’ve already developed fibrosis and so I want to be more informed in my choices for the future.

[Notmyusername]

Hi Afya, I'm in a similar boat, I was diagnosed with pre mf on Dec. I have a low level of scarring and am on interferon. As you say it's a lot to process especially in the beginning. It normalises a bit although I still have days where I think about it a bit more. What helps me is to remember that for many people and possibly with the help of interferon scarring won't progress or will do so only very slowly, and that the likelihood of new treatments becoming available in the future is quite high. So overall, in the context of the situation there's some hope to lean on. Happy to chat more with you if you would like.

[Afya23 in reply to Notmyusername]

Thanks Notmyusername for sharing your story . Seems like they’re a lot of people with this scarring . As daunting as it is I am hopeful the interferon will slow the progress. It’s however difficult not to think about it at times . Thanks and best of luck in this journey.