Have still got a very painful ulcer on my ankle though HU toxicity after 13 years. My consultant has changed me over into Anagrelide but although I have been on it for a month, it shows no sign of getting better. I have it dressed each week at the Medical Centre and have to take anti biotic every day. Has anyone had experience of the HU ulcers and if so, how long do they take to heal?
All advise would be welcome.
Thanks,
Katie
Ulcers on ankle
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MPN-MATE Admin
- Site Admin
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Re: Ulcers on ankle
Hey Katie... 
Lovely to hear from you again, although I am sorry that you are suffering with what I call a seemingly 'wicked problem' that all of us who might have ever taken HU, are likely to experience to one degree or another...
Not so long ago, I was requested by an oral pathologist to allow them to do three (3) biopsies on me. They seemed very keen to get cutting... However, I reiterated that nothing would transpire until I had had time to consult w/ my specialist.
When first diagnosed Katie, I was on HU for a period that proved to be a most horrendous three months. During that time I almost always had mouth ulcers, burning sensations in my legs, the most disturbing mental fugue, and bleeding events in my throat, nose and gums...
One of those said mouth ulcers has never really healed, and that is one of the sites that they want to test. The other two, my lower lip, and gum.
I was referred to a specialist dermatologist who will reassess my lip this month. However, I am not keen at all about allowing them to undertake the other two biopsies unless it is deemed absolutely warranted.
Since that time, unfortunately, I have learned that HU is the usual culprit for causing non-melanoma skin cancers in a great many patients, and the medication I am now taking, (Ruxolitinib), is known to actually make those SCs even worse...
My question of course is; if we already know that, why is anyone taking HU as a frontline therapy? And that is a very good question... Unfortunately, I shall have to leave others to comment upon the pros & cons of our medical culture under the dictates of Big Pharma...
In my view, of course...
Perhaps now that you are finally off the HU, things will begin to settle down for you after sometime... I truly hope so, however, maybe others will chime in in due course as well...
Best thing though is that you are finally off the HU, again, in my view...
Sorry I cannot be of more assistance to you at the present Katie, and also that you are having to go through what is obviously a painful and disturbing experience. Maybe its time to look into some natural remedies to aid healing... I will definitely let you know if I find anything...
Best wishes Katie
Steve
Lovely to hear from you again, although I am sorry that you are suffering with what I call a seemingly 'wicked problem' that all of us who might have ever taken HU, are likely to experience to one degree or another...
Not so long ago, I was requested by an oral pathologist to allow them to do three (3) biopsies on me. They seemed very keen to get cutting... However, I reiterated that nothing would transpire until I had had time to consult w/ my specialist.
When first diagnosed Katie, I was on HU for a period that proved to be a most horrendous three months. During that time I almost always had mouth ulcers, burning sensations in my legs, the most disturbing mental fugue, and bleeding events in my throat, nose and gums...
One of those said mouth ulcers has never really healed, and that is one of the sites that they want to test. The other two, my lower lip, and gum.
I was referred to a specialist dermatologist who will reassess my lip this month. However, I am not keen at all about allowing them to undertake the other two biopsies unless it is deemed absolutely warranted.
Since that time, unfortunately, I have learned that HU is the usual culprit for causing non-melanoma skin cancers in a great many patients, and the medication I am now taking, (Ruxolitinib), is known to actually make those SCs even worse...
My question of course is; if we already know that, why is anyone taking HU as a frontline therapy? And that is a very good question... Unfortunately, I shall have to leave others to comment upon the pros & cons of our medical culture under the dictates of Big Pharma...
In my view, of course...
Perhaps now that you are finally off the HU, things will begin to settle down for you after sometime... I truly hope so, however, maybe others will chime in in due course as well...
Best thing though is that you are finally off the HU, again, in my view...
Sorry I cannot be of more assistance to you at the present Katie, and also that you are having to go through what is obviously a painful and disturbing experience. Maybe its time to look into some natural remedies to aid healing... I will definitely let you know if I find anything...
Best wishes Katie
Steve
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socrates_8
- Posts: 28
- Joined: Tue Apr 23, 2019 11:34 am
Re: Ulcers on ankle
Hey again Kate...
Just curious, as you mentioned in a previous post that you were seeing Dr Cecily Forsyth into the future... How did that go for you?
Have you now changed consultants or are you still seeing your previous?
When you saw Cecily, did you mention your ankle and if so what was her response? What were her thoughts on you taking Pegasys?
Katie, so far I have found the following article which might be of some assistance(?):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2683228/
And here is an extract:
"The ulcers are caused by a reduction in cell viability that occurs when hydroxyurea disrupts the S phase (synthesis) of the cell cycle. Hydroxyurea inhibits the synthesis of DNA, which causes damage to basal keratinocytes and hinders the production of collagen. Inflammatory mediators that are derived from platelets and related to myeloproliferative disorders may play a role in causing the ulcers. Treatment involves stopping the hydroxyurea therapy and applying a moist wound dressing. The ulcers do not respond to conventional therapy alone and will not heal without cessation of hydroxyurea."
There are a couple of other articles referring to aiding the healing of HU Leg Ulcers:
http://www.bloodjournal.org/content/94/ ... ecked=true
https://www.sciencedirect.com/science/a ... 7614000855
Apart from cessation of HU, possibly the only thing that might help is loads of Vitamins C, A & D to aid in a speedy repair to your skin now you are finally off HU. Best steer clear of direct sunlight until well after you are on the mend, and I am sure you will be in time Katie. Well such is my fervent wish for you in any event...
Best wishes and I hope that some of this helps Katie...
Steve
PS. Let's do a cafe catch up some time soon...
REFERENCE
Antar et al 2014. "Successful treatment of hydroxyurea-associated chronic leg ulcers associated with squamous cell carcinoma." Hematology/Oncology and Stem Cell Therapy: Vol. 7, Issue 4, (Dec. 2014), Pp. 166-169. https://doi.org/10.1016/j.hemonc.2014.09.008
Dissemond, J., & Körber, A. (2009). Hydroxyurea-induced ulcers on the leg. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 180(11), 1132. doi:10.1503/cmaj.081042
Stagno, F., Guglielmo, P., Consoli, U., Fiumara, P., Russo, M., & Giustolisi, R. (1999). Successful Healing of Hydroxyurea-Related Leg Ulcers With Topical Granulocyte-Macrophage Colony-Stimulating Factor. Blood, 94(4), 1479-1480. Accessed July 06, 2019. Retrieved from http://www.bloodjournal.org/content/94/4/1479.
Just curious, as you mentioned in a previous post that you were seeing Dr Cecily Forsyth into the future... How did that go for you?
Have you now changed consultants or are you still seeing your previous?
When you saw Cecily, did you mention your ankle and if so what was her response? What were her thoughts on you taking Pegasys?
Katie, so far I have found the following article which might be of some assistance(?):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2683228/
And here is an extract:
"The ulcers are caused by a reduction in cell viability that occurs when hydroxyurea disrupts the S phase (synthesis) of the cell cycle. Hydroxyurea inhibits the synthesis of DNA, which causes damage to basal keratinocytes and hinders the production of collagen. Inflammatory mediators that are derived from platelets and related to myeloproliferative disorders may play a role in causing the ulcers. Treatment involves stopping the hydroxyurea therapy and applying a moist wound dressing. The ulcers do not respond to conventional therapy alone and will not heal without cessation of hydroxyurea."
There are a couple of other articles referring to aiding the healing of HU Leg Ulcers:
http://www.bloodjournal.org/content/94/ ... ecked=true
https://www.sciencedirect.com/science/a ... 7614000855
Apart from cessation of HU, possibly the only thing that might help is loads of Vitamins C, A & D to aid in a speedy repair to your skin now you are finally off HU. Best steer clear of direct sunlight until well after you are on the mend, and I am sure you will be in time Katie. Well such is my fervent wish for you in any event...
Best wishes and I hope that some of this helps Katie...
Steve
PS. Let's do a cafe catch up some time soon...
REFERENCE
Antar et al 2014. "Successful treatment of hydroxyurea-associated chronic leg ulcers associated with squamous cell carcinoma." Hematology/Oncology and Stem Cell Therapy: Vol. 7, Issue 4, (Dec. 2014), Pp. 166-169. https://doi.org/10.1016/j.hemonc.2014.09.008
Dissemond, J., & Körber, A. (2009). Hydroxyurea-induced ulcers on the leg. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 180(11), 1132. doi:10.1503/cmaj.081042
Stagno, F., Guglielmo, P., Consoli, U., Fiumara, P., Russo, M., & Giustolisi, R. (1999). Successful Healing of Hydroxyurea-Related Leg Ulcers With Topical Granulocyte-Macrophage Colony-Stimulating Factor. Blood, 94(4), 1479-1480. Accessed July 06, 2019. Retrieved from http://www.bloodjournal.org/content/94/4/1479.
-
peterpotter
- Posts: 4
- Joined: Wed May 08, 2019 5:40 am
Re: Ulcers on ankle
Hi Steve,
Sorry not to be able to be of help regarding Katie's leg ulcers. It must be awful for her having them and I hope that they do start to heal soon. I do know of various people with leg ulcers (caused by things other than HU) who have reported improvement with using manuka honey on them.
Regarding my own situation of having HU related oral ulcers, I had a "eureka moment" this morning at some unearthly hour as a result of following one of your links that you have here regarding leg ulcers. After peering at many related articles I finally found the sort of thing I have been looking for for a very long time, namely.... "Symptomatic Mucocutaneous Toxicity of Hydroxyurea in Philadelphia Chromosome Negative Myeloproliferative Neoplasms, The Mister Hyde Face of a Safe Drug", a study of 993 patients that was done in Rome who were being treated with Hydroxyurea.
Here is a link to the full article https://onlinelibrary.wiley.com/doi/ful ... cncr.26194
The article covers Ulcerative skin toxicity, oral aphtosis, and nonulcerative skin toxicity, and views all three as different manifestations of the same toxicity. Approximately 8 % of the nearly 1000 patients taking HU had mucocutaneous toxicity, and of that group (8% of the total) 58.8% had leg ulcers, 21.6% had mouth ulcers, and 19.6% had nonulcereative skin toxicity.
The research is surprisingly readable, as these things go, and the sections relating to cases of patients with HU derived oral ulcers are most helpful. I have printed off a copy to send to my haematologist who, unfortunately, has been of the opinion that "none of the many thousands of patients I have treated with HU have had such things" and it has been an uphill battle to convince her of the plain truth in my case. I am hoping that this article by other boffins in white coats with "MD" after their names might make her, at least, take notice that it can indeed happen (albeit fairly rarely... at roughly 11 patients per 1000).
Anyway, thanks for the link that got me started on tracking this research down, it has been very helpful. I see my haematologist early next month and am already feeling a little stressed about it. My mouth becomes a mess of ulcers if I go above 1000mg/day HU and this is not sufficient to keep my platelet levels down as far as is desirable.
Many Thanks and Best Wishes,
Peter
Sorry not to be able to be of help regarding Katie's leg ulcers. It must be awful for her having them and I hope that they do start to heal soon. I do know of various people with leg ulcers (caused by things other than HU) who have reported improvement with using manuka honey on them.
Regarding my own situation of having HU related oral ulcers, I had a "eureka moment" this morning at some unearthly hour as a result of following one of your links that you have here regarding leg ulcers. After peering at many related articles I finally found the sort of thing I have been looking for for a very long time, namely.... "Symptomatic Mucocutaneous Toxicity of Hydroxyurea in Philadelphia Chromosome Negative Myeloproliferative Neoplasms, The Mister Hyde Face of a Safe Drug", a study of 993 patients that was done in Rome who were being treated with Hydroxyurea.
Here is a link to the full article https://onlinelibrary.wiley.com/doi/ful ... cncr.26194
The article covers Ulcerative skin toxicity, oral aphtosis, and nonulcerative skin toxicity, and views all three as different manifestations of the same toxicity. Approximately 8 % of the nearly 1000 patients taking HU had mucocutaneous toxicity, and of that group (8% of the total) 58.8% had leg ulcers, 21.6% had mouth ulcers, and 19.6% had nonulcereative skin toxicity.
The research is surprisingly readable, as these things go, and the sections relating to cases of patients with HU derived oral ulcers are most helpful. I have printed off a copy to send to my haematologist who, unfortunately, has been of the opinion that "none of the many thousands of patients I have treated with HU have had such things" and it has been an uphill battle to convince her of the plain truth in my case. I am hoping that this article by other boffins in white coats with "MD" after their names might make her, at least, take notice that it can indeed happen (albeit fairly rarely... at roughly 11 patients per 1000).
Anyway, thanks for the link that got me started on tracking this research down, it has been very helpful. I see my haematologist early next month and am already feeling a little stressed about it. My mouth becomes a mess of ulcers if I go above 1000mg/day HU and this is not sufficient to keep my platelet levels down as far as is desirable.
Many Thanks and Best Wishes,
Peter
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socrates_8
- Posts: 28
- Joined: Tue Apr 23, 2019 11:34 am
Re: Ulcers on ankle
Morning Peter...
Good to hear from you.
Thank you for the article you have referenced. It appears to be a soundly produced one at that w/ no declarations by the authors of sponsored funding sources etc. Hence, one might presume few 'conflicts of interest'
Although I shall need to read through it again shortly, in its entirety... On the face of things, I believe that it is incontrovertible evidence of the harms of using HU as a blanket, "Front Line Treatment" regime. However, it appears to me now, that these results were already known factors, and the 'Utilitarian' view of the 'Greatest Good' seems to hold sway, in this instance...
In point of fact, and if we are to believe most of what is stated in that article's 'Conclusion':
"CONCLUSIONS:Muco-cutaneous toxicity during HU treatment is more common than expected and may present with different clinical fea-tures. Moreover, it often requires a permanent drug discontinuation and only a partial resolution is reported to occur in approximately 25% of patients.Cancer2012;118:404–9.VC2011 American Cancer Society."
Which translates very neatly into meaning that 25% of patients will not resolve these HU born ulcers at all...
The 'Laser Treatment' I wrote of earlier sounds like it may have great promise, but when... will it become available to long term sufferers is still anyone's guess...???
Hopefully, Katie will also respond shortly Peter... As Katie is currently going through the motions of using Anagrelide to get off HU completely. Her Leg Ulcer is finally starting to heal w/ the HU discontinuation, and all of that after c. 13 years of HU too, if I am not mistaken (?)
However again, like mine, Katie's Platelets are extremely high at the present...
Once she has her platelets back under control, Dr Cecily Forsyth is planning to move Katie onto Pegasys'. Well such is my understanding in any event.
We will be meeting up for a cafe and a chin-wag shortly, and I will be sure to receive her progress reports and fill you in again in due course...
Keep smiling my buddy across the ditch...
Best
Steve
Good to hear from you.
Thank you for the article you have referenced. It appears to be a soundly produced one at that w/ no declarations by the authors of sponsored funding sources etc. Hence, one might presume few 'conflicts of interest'
Although I shall need to read through it again shortly, in its entirety... On the face of things, I believe that it is incontrovertible evidence of the harms of using HU as a blanket, "Front Line Treatment" regime. However, it appears to me now, that these results were already known factors, and the 'Utilitarian' view of the 'Greatest Good' seems to hold sway, in this instance...
In point of fact, and if we are to believe most of what is stated in that article's 'Conclusion':
"CONCLUSIONS:Muco-cutaneous toxicity during HU treatment is more common than expected and may present with different clinical fea-tures. Moreover, it often requires a permanent drug discontinuation and only a partial resolution is reported to occur in approximately 25% of patients.Cancer2012;118:404–9.VC2011 American Cancer Society."
Which translates very neatly into meaning that 25% of patients will not resolve these HU born ulcers at all...
The 'Laser Treatment' I wrote of earlier sounds like it may have great promise, but when... will it become available to long term sufferers is still anyone's guess...???
Hopefully, Katie will also respond shortly Peter... As Katie is currently going through the motions of using Anagrelide to get off HU completely. Her Leg Ulcer is finally starting to heal w/ the HU discontinuation, and all of that after c. 13 years of HU too, if I am not mistaken (?)
However again, like mine, Katie's Platelets are extremely high at the present...
Once she has her platelets back under control, Dr Cecily Forsyth is planning to move Katie onto Pegasys'. Well such is my understanding in any event.
We will be meeting up for a cafe and a chin-wag shortly, and I will be sure to receive her progress reports and fill you in again in due course...
Keep smiling my buddy across the ditch...
Best
Steve
Last edited by socrates_8 on Thu Aug 22, 2019 8:46 am, edited 1 time in total.
Re: Ulcers on ankle
Katie, ankle wounds in general take a long time to heal. After 4 years on HU, my ankle ulcer appeared on May 20. I went off of HU on Sept 19. The wound clinic quickly noticed some healing going on. I went on Pegasys Dec 6. By the first week of April. it had shrunk to almost nothing and had scabbed over. I was approved to resume swimming and wearing normal shoes the first week in April.
Your healing could take some time. I think my situation was not typical for several reasons but we don't need to get into the details.
Your healing could take some time. I think my situation was not typical for several reasons but we don't need to get into the details.
Re: Ulcers on ankle
Thank you so much to all of those who sent a reply about my ankle ulcer. I do apologise for not having seen your replies before. I rather expected them to flash up on my email. Hope I have managed to sort this out now.
The ulcer is healing slowly but on changing to Anagrelide, I seem to have developed several other rather undesirable symptoms. Hopefully, when the ulcer is healed I shall be able to move on to Peg but sadly, my platelets are still over 800.
I do appreciate all the advice as like everyone else, I do feel alone sometimes but try to remain positive.
Best wishes,
Katie
The ulcer is healing slowly but on changing to Anagrelide, I seem to have developed several other rather undesirable symptoms. Hopefully, when the ulcer is healed I shall be able to move on to Peg but sadly, my platelets are still over 800.
I do appreciate all the advice as like everyone else, I do feel alone sometimes but try to remain positive.
Best wishes,
Katie