Rux and Hydroxy

[Graham7694]

I had my haematologist appointment this morning.

Platelets are still high after 8 months on Ruxolitinib 20mg BD so I am to start Hydroxycarbamide 500mg each day as well as the Rux 😩

Anyone else taking both?

Regards

Graham

[socrates_8]

Hey Graham ...

I have been on Ruxolitinib now for just coming on two (2) years. My dose has been 25mg/bd & 20mg/bd alternating back & forth now for some time to try to gain a better response from my ever high platelets, (last count 881 & I am often hovering around the 1M).

I spoke to Dr Mesa, (via email sometime back), who agreed that a combination therapy might be useful in my case, however, my Haematologist says nothing on the subject when I bring that to her attention... (Combination therapy etc)... (Not Mesa's opinion's as that might appear oddly unethical in the medical fraternity).

Strangely though, I am actually here learning hopefully for my own benefit, and not for worrying about what medical niceties might not be being observed etc...

However, I am again growing quite concerned, as I suspect that I have already experienced at least two (2) TIAs in the past, and really have no further desire to frequent those lofty highs anytime soon, so-to-speak...

Hence, I would truly appreciate your feedback as to how Combination Treatment (CT) regime ultimately performs in your instance, as things unfold of over time course...

In the earlier times of my diagnosis, I was on HU for circa 2-3mths, and I found it to be intolerable on that occasion. However, perhaps in combination (CT), might prove to be a different outcome, and one for me to reconsider, if my stubborn platelets will not take respite etc...

Best wishes Graham, and look forward to learning more about your experiences etc...

Steve

(Sydney)

[Graham7694 in reply to socrates_8]

Hi Steve

I will be back for more bloods on December 13th so will keep you informed!

Initial thoughts are that I feel as like I have been hit by a bus but I guess my body will get used to it. My other bloods have always been good and it is just those pesky platelets that keep hovering around the 800.

I had read of the combination trials and have not as yet found anyone doing both but I am sure that someone will come

along sooner or later

Regards

Graham

[socrates_8 in reply to Graham7694]

Hey again Graham,

Thanks, it will be very interesting to learn more about how it all unfolds Graham...

As stated earlier, I suspect that sooner or later I will most likely have to follow your lead.

Graham, what driver mutation(s) do you have?

I am CALR+ Type 2, and also ASXL1+, and as a result my platelets have always been very stubborn, and the lowest they have ever been on Ruxolitinib was 648(?) I believe or something very similar...

Best wishes

Steve

[Graham7694 in reply to socrates_8]

Hi Steve - I am PMF with CALR type 1.

[socrates_8 in reply to Graham7694]

Well that much is interesting...

My research thus far has indicated that CALR Type2 was usually associated with having to deal with a higher platelet regime. However, you are Type1...

I was initially diagnosed ET and later changed to MF. Did you follow a similar path Graham?

My first BMB was Grade2 fibrosis, however, my exercise regime & diet, (I believe), have assisted in seeing a down-grading to Level1 fibrosis as of May 2018.

My fatigue is a constant battle at the present, along with Restless Leg Syndrome (RLS), I sleep very poorly, and usually suffer from anaemia cycling up & down etc.

Any of this familiar to yourself?

Steve

[Graham7694 in reply to socrates_8]

Fatigue is definitely an issue. I was diagnosed MF following BMB but at hyperskelluar stage. It did come as a surprise to me as was expecting a ET diagnosis.

A lot of my symptoms disappeared shortly after starting the Ruxolitinib. The itching went away within 2 weeks as well as the night sweats. The rux however isn't doing anything for the platelets which have hovered between 707 and 872.

Generally symptoms are better now but am always knackered and particularly after exertion. I have just started to try to do a little more exercise now as the weight is creeping on - a combination of rux, gallbladder removal and stopping smoking.

I do get a lot of pins and needles and numbness - particularly in my left hand but this is more irritating than painful. I have also started vaping CBD liquid and that has helped tremendously with my lower back issues!

I will however get there sooner or later. I have a lot of faith in my team at Worcester Royal

Regards

Graham

[socrates_8 in reply to Graham7694]

Graham,

I tried the CBD for a while too... And while it helped relieve some pain and nausea, however, it also exacerbated my fatigue levels, (which I can really struggle with), and I eventually ceased using it...

Yes, same results almost with the advent of Rux'. Spleen became smaller (normal although it was never massive), itching disappeared completely (almost), but I still have my cold sweats, low grade temperatures, & RLS, and my bone pain is always less intensified come the warmer seasons.

I have also had two (2) TIAs which are of a primary concern, because I would hate to suffer a permanent form of paralysis...

Anyways, best wishes Graham and please stay in touch...

Steve

[Graham7694 in reply to socrates_8]

I had my 4 weekly haemo appointment this morning. The combination treatment has brought my platelets down to 660 so a massive improvement although I am not feeling it! I have had bouts of fatigue come back again but the pins and needles I was getting in my left hand have gone away. Going to continue the Ruxolitinib 20mg bd and hydreacarbamide 500mg for next 8 weeks unless there are any issues

[Tico in reply to Graham7694]

Hi Graham, nice to see your platelets coming down, pity your not feeling it. A thing a few of us on here understand when the blood counts coming down don't necessary make the fatigue any easier for us.Hope the next few weeks you make further improvements & in the meantime you have a merry christmas & hoping you have more energy going into 2019! Atb,tina.🤗

[Graham7694]

8 week appointment yesterday whilst continuing the combo treatment and was hoping for good news. Platelets had gone up since last appointment to 700 🤔 Hydroxy dose doubled and Ruxolitinib staying at 20mg bd.referal to be made to QE in Birmingham to start discussions on a possible sct

[Lab-Rat in reply to Graham7694]

Hi Graham, I am sorry your platelets are not responding to your combo-therapy, having to increase Hydroxy dose, and that SCT may be on the cards. That must be a shock for you. Let us know how you are doing and all the best with discussions on a possible SCT.