mylefibrosis and stomach issues

[Leighcox85]

hi I wondered if anyone else has developed stomach issue since being diagnosed I was diagnosed many years ago with primary mylefibrosis but 3 years ago I suddenly started with severe pain in my stomach and lower back it prevents me eating iam extremely bloated all of the time and I pass blood it ranges from severe constipation to diarrhoea and although I have spoken to my doctors no one seems to give me any answers I don’t know what is wrong with me is this disease related iam 37 so on the younger side for mf I had an endoscopy and had biopsies taken but iam yet get my results I just wondered if anyone suffered anything similar

[Mazcd Partner MPNVoice]

hello Leighcox85, so sorry to hear that you are experiencing this, not very nice for you, hopefully you won't have to wait too long for the results of the biopsies and endoscopy and you get some answers. Best wishes, Maz

[socrates_8]

Hey LeighCox...

My name is Steve from Sydney...

You've mentioned that you are MF, & I believe that you are also taking Ruxolitinib, (25mg AM & 20mg PM), is that correct?

I am Post ET / MF, & although my spleen was only ever slightly enlarged, what you described, sounded to me just like when my spleen was pressing against my stomach causing me to always feel full. Having a pain in the back, (mine was under the shoulder blade on my left side), can also be another indicator splenomegaly...

You might need to have some scans undertaken to see which of your organs is the culprit. (Because there canb be other issues too).

I have scans repeated every so often as my Spleen tends to bounce around a tad, (but never becomes massive in size as it can w/ others). Neverthelss, it can cause some major issues if left unattended, so please refer this quickly to your medical team... It may ultimately just prove to be a need for a Rux' dosage increase ?

Ongoing, I have had many issues w/ my stomach, and regularly suffer from usual bouts of constipation & followed by its converse cousin, (from time to time)... :-((

Personally, I rely a great deal on my "Anti-Inflammatory diet & exercise, (cycling in my case). I try to make sure that I am always trying to improve the inflammation present in my body, by doing whatever works best for me etc...

All that being said Leigh, please talk w/ your medical MPN Specialist asap!

Stay happy, safe & well... ( & well hydrated too...).

Best wishes

Steve

[Leighcox85 in reply to socrates_8]

Hi Steve thanks so much for reply I was on rux but I recently began tapering off as it no longer works for me on my last scan my spleen was 28 cm its massive my doctors are concerned I have always had a big spleen and I get a lot of pain from it but this is very different to my usual pain I have pvt and I have a history of bleeding I contacted my team today and they advised I need to go to a and e immediately I managed to get down to 10/10 rux and iam due change to fedratinib on the 4 of august I just wasn’t sure if any of this is normal or I should be really worried

[socrates_8]

Hey again Leigh...

I'm sorry to learn that you & your team have already decided that the Rux' is no longer working for you...

Obviously, keeping your Spleen under control has to be your prime concern at the moment...

Removing one's Spleen, is like removing one's "immune system", naturally I hope that will not be required & that you find something else to help manage the problem... (fingers crossed of course)

I've learned through both my own experiences, (& those of other MPNers), that all of us can & often do have different reactions to our variety of diverse drug regime therapies...

It's astounding really how differently our individual body chemistry can react, even for those of very similar statistical demographics etc.

I am on what I thought was the Max' dose of Rux', (25mg b/d), or 50mg per day...

Rux' worked almost instantaneously in my case... My spleen returned to normal, & most of my symptom burden lost their intensity. In my case, the fatigue & brain fog were really so disturbing... They still are, (from time to time). However, after first starting w/ HU, then Interferon Alpha, (early in my first year of Dx). My life almost returned to something more akin to what we might describe as "normal" (whatever that is these days, afte rI commenced on Rux'.

Later, I learned from some other MPNers, of a few people who were taking even larger Rux doses,; & apparently doing quite well, (at that time)...

Fedratinib, has good reports for some... So naturally I wish you well on that journey too... Please do stay in touch (from time to time – if you like...?)

It would be good to learn via your experiences w/ that drug therapy too...

I too suffered from from Portal Vein Thrombosis (PVT), (in my earlier stages - along w/ gum & nose bleeds), & lately I am having some dried blood in my nasal passages again overnight.

Some stomach discomfort is always present in my case too...

Presently, I am having a significant drop in my WBC, (especially my Neutrophils), not sure as to why(?) My Platelets are always between 700s-1M, (Currently low 800s). From the range of 800s to 1M, I remain quite concerned, as I have already had x3 TIAs, & I'd prefer not to have another...

Unfortunately, I also have Von Willebrands Sydnrome (VWS), (acquired?), as opposed to genetic, (so they deduce at least...).

Leigh, I recently had my 63rd B'day, & still love cycling longer distances... However, all my bones & joints unfortunately do not share my elation, & constantly like to remind me. (By The Way, I never really cycled until a year after Dx). In my case, I find cycling really helps me stay focussed, while helping my overall health benefits ...

My "Driver" mutation is CALR Type2. Usually indicates a higher platelet regime. Some research would suggest that thrombosis w/ CALR is usually benign or more indolent in nature than say that of JAK2... However, that does not hold true in my case. My last TIA was most unnerving, w/ some lingering affects that have mostly dissipated & lessened in their intensity since that event transpired, thank goodness... My mental recall, has its moments, which I find incredibly disturbing. My memory is but a shadow of its former capacity, unfortunately... However, all my limbs thus far are functioning adequately...

Anyways Leigh, please do stay in touch, & let me know which way your medical team advise is best for you moving forward etc...

Hopefully, you & your family & friends are all keeping well within that terrible heat-wave you guys are all experiencing at the present... 40ºC is very warm is it not?

Best wishes Leigh...

Steve

[hunter5582]

Sorry to hear about the GI issues. I have also had my own share of those. Given what you describe, i would think the docs may also want to do a colonoscopy to sort out what is going on. There is also some type of imaging that may be recommended like a barium swallow. I have done all of the above and been scanned every which way from Sunday due to a number of issues. Sometimes I think that I must be stained purple inside from all the contrast! 🙃

Something that is non-invasive and potentially relevant is to evaluate your microbiome. The GI microbiome is very important and we suffer from significant issues when it is disrupted (constipation,diarrhea, inflammation, and more). The assessment is simple to do using a stool sample. the doc can set it up easily. There are also at-home tests these days but the ones the docs can do are likely better.

As Socrates points out, there are additional treatment options for you since you are refractory to RUX. The treatment options for MF and the other MPNs are expanding. Working with a MPN Specialist, you can identify the right choice for you.

All the best as you move forward.

[souplover]

I'd take a look at the side effects of whatever medication you're taking. I'm on hydroxyurea and have been experiencing a lot of "stomach" problems. I'm seeing a nutritionist to try to work out a diet I can live with. Apparently the hydroxyurea can affect the microbiome in your stomach and intestines. Maybe it's the same with the other meds for ET and PV.