Overdue Update

[azaelea]

Hello everyone. I am not sure when I last posted my health situation but think it was mentioning abdominal pains and querying whether Hydroxycarbamide could be affecting my colon. I’ll try and keep this short. From midJune I suffered constant symptoms like IBS(D) . I already had been diagnosed with Diverticulosis some years ago but didn’t think this was the cause. However after certain tests I was fast tracked for a Sygmoidoscopy in August, which revealed Severe Diverticulosis, Stage 2, but fortunately nothing sinister was found. Prior to this procedure my Haematologist agreed to my request that I stop taking my HU to see if this helped my tummy pains. My bloods were all fine at that point and Platelets 301, remaining in the 300 range till mid August but….after this a rapid increase to 721 in mid September. I was still suffering from ongoing severe nausea and GP put this down to the Diverticular trouble. However blood tests showed no inflammation so was given anti-sickness pills which eventually worked. I have been monitored by phone calls and blood tests by my Haematologist and when speaking this week it has been decided I go back onto HU - 500 mg 7 days week. Platelets 687 and WCC 12.6 . I have another blood test at end of this week and telephone appointment with Haemo week on Monday. I doubt if that’s enough time for HU to work yet, but she has made this appointment . I hope my ET JAK2 has not progressed through all this. Dare I say I’m feeling bit better now ( touch wood)🙏🙏 Another problem was BP suddenly started being erratic and finally got that regulated again. Hope you’re all managing alright with the various problems MPN brings with it. Kind regards, Fran

[hunter5582]

Glad to hear that the symptom juggling seems to be yielding positive results. It can be a challenge to sort out what is what with MPNs. Wishing you continued success.

[Wilma66]

My doctor tried to do a colonoscopy and couldn't get in. He sent me to another doctor while i was fasting the next day for a barium enema and he was afraid he would poke a hole in my colon. i also had diverticulosis for years. I was sent to a surgeon. Had surgery June 2nd two years ago. He took out my sigmoid and some extra colon. I had severe diverticulitis and an abscess. I don't know what caused mine. I also have ET and Jack 2. God bless you 😊

[azaelea in reply to Wilma66]

Oh dear, sorry to hear of your operation. That’s what I’m afraid of , having an abscess . Apparently I have 15 severe diverticula. Just have to carry on and hope for the best.

[lizzziep]

Hope all goes well for you 🙏🏻

[dogsandhorses]

Based on my personal experience, I am absolutely certain that Hydroxyurea caused MY digestive problems. I was taking 500 mg. daily, and lost from 135 lbs. to 105 lbs. I had no appetite, constant diarrhea, and stomach pain. This is not to mention hair loss, nail damage, thin skin, light sensitivity, etc.

Had 2 CAT scans, colonoscopy, endoscopy, and nothing was diagnosed. I complained so much that the Haematologist reduced the Hydroxyurea to every other day, which helped a little. My platelets have never been below the 400's on this drug no matter how often I took it. Still having problems and complaining to the Dr., she finally told me to just quit taking it. NO PLAN was given for what to do after that. I made the decision that I didn't want to go back to the beginning of platelets at 900, so I took the Hydroxyurea every third day. My platelets are in the 500's now, but I feel MUCH better. Can eat again, and am slowly gaining weight. Hair has quit falling out so much as well.

Dr. Andrew Kuykendall, MPN Specialist of Tampa, Florida says that after Drs. have studied high platelets for over 50 years they have been unable to draw a direct correlation between high platelets and thrombotic events. He also says that there is no evidence that a certain platelet "number" is the right number. That is good enough for me to feel comfortable with a little higher number, and the ability to have a better quality of life at a lower dose of this dangerous chemo drug.

[Mostew in reply to dogsandhorses]

Sounds like you decided on a good plan. I agree. Rather slightly higher platelets (under 600) and less chemo

I'm going to discuss taking less on Friday at my appointment.

I'm taking every other day but 3rd sounds better. I don't have symptoms but no need to wait till I do...

How long have you been taking lower dose and when's next blood test

[dogsandhorses in reply to Mostew]

I took every 3rd for 2 months, and had a blood test that had my platelets at 560. I can live with that, and so can my hemo. She said looks like you figured it out.

[JAK2positive]

Very sorry to read of your diverticular problem. It’s a worry when we become unwell and wonder whether it relates to our MPN or treatment in some way. It’s easy to think the worst.

Personally, I have PV and have been on Hydroxycarbamide for about ten years, currently taking 6,000mg/week (that’s 5 days x 2 capsules; 2 days x 1 capsule). This has been my prescription for the past couple of years.

Happily, there’s been no effect on my digestive system at all, including my colon, and few other side effects. So could HU be a causal factor? Other people who’ve answered here think it might be but that’s not been my experience. It looks like your doctors are doing the right thing, though, by changing one potential factor at a time and giving the change time to take effect. I’m pleased to note you’re feeling a bit better now and that your haematologist is putting you back on HU to bring your bloods back under control. I hope the results are good and don’t compromise your diverticulitis.

Meanwhile (and I know this is easy to say but not always easy to do), looking after your own wellbeing really helps. If you can keep a cool head, eat well, be active and look after yourself otherwise, that positive attitude can help carry you through the difficult times.

Best wishes

[Janis12]

Hi, sorry to learn you are having such uncomfortable symptoms, it makes life miserable. I have been on hydroxy for three years now and about 18 months ago started with stomach pai/burning on eating and drinking It would come and go and now it is permanent unless I take medication for it. My thoughts as to the cause would be the hydroxy, the haematologist did not think so but the gastroenterologist had no doubt about 'hydroxy bad boy', causing gastritis So I decided to change to Pegasys (my platelets were rising anyway and I did not want to increase hydroxy dose). Had my first peg jab this week but of course it will be some time before I come off hydroxy so it will be interesting to see what happen to my stomach discomfort. Will keep you posted. Best wishes.

[azaelea in reply to Janis12]

Thanks for your reply Janis. I have been thinking of changing to Peg for some time now but thought ‘ better the devil you know’ etc…If my Gastro symptoms return I think I might do as you have done. I’ll be interested to hear how you get along with Peg after a few months. Best wishes .

[Mostew]

Thanks for update. . Hopefully no progression and meds will bring platelets down quickly. You never know, you may even see them down at end of week. Let us know

Best wishes to you

Carolyn