I have read that it is important to protect yourself from the sun, while on HU. I have been taking precautions, most of the time. My concern is that my dad had melanoma and it was caught too late! I have to admit that this makes me anxious. I told this to my Hematologist/oncologist yesterday and she had no concerns whatsoever. I am looking for a new Dr. because she just does not seem to want to engage with me about my questions and makes me feel like I am overreacting. The last two times I have seen her my BP was extremely elevated and I believe it’s her that causes this because she is incapable of empathy!
Thanks! I had to vent!
Hope you all have a great weekend!
Kimberly
Written by
Wewo01
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Definitely agree it is time for a new doc. There really are providers who combine the science of medicine with the at of healing. Both matter. I have found some wonderful providers for my care team. I have also dismissed docs who did not make the grade. That is the patient's prerogative.
Just is case you have not seen it, here is a list of patient-recommended MPN Specialists. mpnforum.com/list-hem./
Thanks, Hunter. Yes, you have provided this, previously. I appreciate it. I live in Mississippi and there is only 1, 2 hours away and I have read that he is not an MPN specialist but knows more then the average Dr. There is one in Louisiana and one on Alabama, both more than 5 hours away. At least it is a start! My hem/onc just upped my HU to 1500mg a day. I feel like I am poisoning my body! My platelets have dropped to 499. That’s the lowest in a year but my white blood count remains high and as does my RDW-SD and RDW-CV. HCT is 48. My total protein has been high for the last two tests. In February I found out that I was anemic and she did not repeat that test, yesterday. 🤷♀️
I would say it is definitely time to consult a MPN Specialist. Do whatever it takes. If it means a 5 hour trip and spending the night sometimes, then it is worth doing. The good news is that the use of tele-video appointments can help cut down on the travel. All docs I know are using the tele-medicine far more extensively now.
My MPN Specialist is two hours away. I found a terrific local hematologist who provides on-going care me and the MPN Specialist consults as needed and provides guidance about the treatment protocol. This arrangement works great.
Given what you are describing, you have very valid concerns about the status/diagnosis of your MPN, your treatment plan, and whether HU is the appropriate treatment option given your situation. You really do need a doc with the expertise to review your situation, the KSAs to provide optimal MPN care, and the willingness to listen to your concerns.
I agree! I am going to actively find and good MPN specialist! One more question, my Dr wants me to take 1000 mg of HU in the morning and 500mg at night. I thought this was a one time a day med and I always take it at bedtime.Thanks!
The dose can be split when on higher dosages. This would tend to maintain a more steady state of the HU as it has a half-life of 3-4 hours. From ePocrates. Pharmacology
exact mechanism of action unknown; inhibits ribonucleotide reductase, immediately inhibiting DNA synthesis; increases fetal hemoglobin levels, RBC water content, and sickled cell deformability; alters RBC adhesion to endothelium
The question is really should you take the higher dose now or wait to consult with a MPN Specialist. That one is your call. I would note that the recommended platelet target for ET per Weill Cornell MPN Center is 600K.
Hi Hunter,I have been doing a good bit of reading and I believe that I don't have ET with Jak2+ I believe I have PV with Jak2+, since my white cell and red cells are all high, as is my HCT and Hemoglobin. In that case HU has only helped lower by platelets, maybe, while my red cells continue to rise and my white cells seem to have plateaued between 13.0 to 13.75 x 10(3)/mcl.
That is what I was thinking too, but do not know enough that I would want to just put it out there. Do note, my old hematologist missed the diagnosis when I progressed from ET to PV about 7 years ago. When the misdiagnosis was detected, that doc fired himself. He said "Your health is more important than my ego." He identified another doc in the practice who has greater blood disorders expertise. I actually like the old doc and respect him for his honesty and willingness to admit a mistake. I now am followed by both the MPN Specialist and a terrific local hematologist who provides the ongoing care.
If you do have PV, then at a minimum you would likely add therapeutic phlebotomy to the treatment plan. Given the current state of research indicating superior MF progression-free survival of PEG-IFN, you might also consider a change to the medication regimen. Hopefully you will soon have a chance to review everything with a MPN Specialist.
I have been going back and looking at my lab history and it's very telling. My RDW-Sd and CV have both been high for a few years but now higher than ever and on an upward trend. Thanks so much for your input! I will be making phone calls tomorrow to find an MPN specialist.
Wewo, I became aware of tocotrienol when my wife, who was moved from HU after 9+ years to Anagrelide because of skin cancer concerns, asked if there was something to get her off Anagrelide because platelets were staying at a million. I learned tocotrienol from red palm oil may lower platelets and with her oncologists approval she used 50 mg of that tocotrienol twice a day. Slowly the count decreased along with the Anagrelide dosage until she was off of the Anagrelide. I want to stress this was one person's experience. I also learned about tocotrienol from annatto refered to as Delta tocotrienol. The link below is about research with Delta tocotrienol and melanoma. Tocotrienols and tocopherols supplements are best used separately several hours apart to avoid absorption competition.. In addition, HU reduces magnesium needed for many tasks such as activating vitamin D and thiamine. Please research these three as they apply to blood pressure. Finally, as you mentioned the toxcity of HU be aware of it's effect on your liver. In addition benzene and toulene are in many products or produced when using a product. For example, paraffin candles when burned emits benzene and toulene. Benzene and toulene were the cause of my wife's ET so I would believe casual contact could be a factor in progression when diagnosed with a MPN. In addition, research the functions of the liver and how it handles toxins and what limits it's ability to flush them out. Always discuss supplements with your health care professional before using any supplement
Understand what you meant. From my 1st appointment with my haematologist, he told me about take precautions and cover up under the sun. I walk every morning, during summer can be very hot (ln Australia), I wear long sleeves cotton top, I wear shorts with sun protection on, been doing that since 2019, I am fine. As long as we know about that and take precautions, it'll be fine.
Hi, I understand your concern about Hydroxycarbamide. Prior to taking it I had a previous history of Melanoma and BCC. With hindsight maybe I shouldn't have been given this drug. Since having Melanoma in 2008 I have always been super careful, no sun, factor 50 etc. After 5 years of Hydroxycarbamide I developed a BCC on my face. I was then taken off Hydroxycarbamide (it was failing to work at this point anyway) and swapped to Peg Interferon.
HiI m in the uk am 67 and diagnosed with PV 12 years ago. I take 1000mgs daily of HU. So far I ve had 2 bccs on my face ( another developing) and 2 in the roof of my mouth ( no sun there!)
I see my consultant who is a brilliant MPN specialist at the largest cancer hospital in the uk, and so I m very fortunate, to discuss changing to interferon. I ll do this rather sadly because HU controls PV extremely well, and I feel great! So, it’s a choice between having a face like a road map a bit of hair loss nothing major, but feeling very well, and risking side effects of a different drug!
However in the grand scheme of things - life could be a lot worse....
I ve always believed in cup three quarters full and a positive mind set.
Best wishes to Mississippi from the English lakes.
Louise you are always so cheerful about things that happen to us ! I have had several carcinomas where light or sun doesn't reach.How horrid to have one in the mouth.How do you treat that??I had one on my left cheek some years ago in spite of taking great care.
Now I am having surgery for one on my lower right eye lid,interrupted by our severe 'confinement ' here. I go again tomorrow for surgeon to photograph the 1/2 done eye lid and decide what he is going to do to make it less ugly.
According to him,my consultant,my opthalmologiste & my G P.......Hydrea is a big culprit .However the one on my eye lid has arrived since changing from
Hydrea to Jakavi,soooooo is it the P V as well????? Cannot work out the eye lid one,never go outside at all without good sun specs even long before PV.
Keep feeling great ,bit more 'freedom ' for you now ,hope you don't get packed out with the 'madding crowds'.X Sally
Well that's interesting ,no P V ,no Chemo drugs....outdoors maybe doesn't help,I have been outside all weathers as we bred competition horses until we came to Fr.When mine started on the eye lid ,it was very small,I was due for surgery with a very good plastic surgeon the day Macron shut us down the first time....in between then and being allowed to have the surgery it became very large ,sore and therefore major work needed.
The one on face was really just a red mark,I had no idea that it was carcinoma...we really must be so careful to check every tiny mark or tiny spot.
Good idea ,the burka,not allowed in France tho,will stick to mask & dark specs.😎♥️ Sally,quaking about tomorrow,have two hour drive which means very early to get up,sort four leggeds & myself,then off to autoroute & further south.Thank goodness for my husband who is my great help.xx
You too Kim,I know you are worried as your father had skin cancer,I think the blonde ,fair skinned people like me are at greater risk than others ,redheads too of course.Hydrea worked for me re the blood for 9 years,it did turn on me ,now I have been on Jakavi for 2 years.
There are many on this site who don't have any skin probs,except the itching......maybe as I grew up when we didn't know about skin cancers,outside without sun protection or sun hats that is the cause for it now ????However I am glad I was young in the Bardot & St Tropez days.Carefree then,Best to you ,Sally
Hi Kim,Amazing that we can meet when we live so far apart. Chin up, it isn’t all bad! This disease is subject to so much research we’ll all be in remission soon! Xx
Ps, Kim, do please find an mpn specialist. I did just that 7 years ago after being treated by about 8 not very clued up locum haematologists. I now have a four hour round trip, and it’s worth every mile. xx
Hi, I have previously had a malignant melanoma and as I'm 60 at the end of the year my treatment is scheduled to start. I have the exact same problem in that they want to put me on HU and I obviously don't want it. It seems idiotic to me to put me at risk of further skin cancers as I'm more receptive to them. I'm in the UK by the way.
Hi Conno61,I don't blame you one bit! I know that melanoma is not necessarily genetic but it can be and my dad had it. I don't like being on HU for that reason.
Hi Wewo01My understanding is that there is a link between HU and BCC, not general melanoma. You need to confirm with a good MPN specialist. Hope that helps.
Thanks for that! I did just read about that. Maybe I assumed melanoma from another source! I see now that it is non-melanoma skin cancers that HU may contribute to.
hi just wanted to share my info. been on HU for years ( approx 1750 a day at ptesent) and dev a m melanoma 2 years ago. with consultant we looked at evidence of melanomas and HU and could find no direct evidence ( though were established connections for other skin cancers) it was based on one research paper, so evidence thin. however we then looked at tx alternatives and they were all marginally worse on the mm/ skin cancer front. i have very fair skin/ worked outside/ burnt as a child/ a million moles so have a fair few risk factors.
be glad to hear of any other research out there. or which tx to go for next as HU not working so well for me now.
i was et 20 years ago, then pv. HU not quite holding back the tide . have venesections , but too many and get too anaemic.
but it did seem HU could not be def linked to my MM.
Vent away!!! This is where we can You should get a new doctor just because you don't feel confident about her, even if she is/is not a good doctor. We need to feel right about our health professionals, just like with counsellors, you need to have a level of feeling comfortable and trust that you will be treated with care and empathy. So if it isn't feeling that way and you can go elsewhere, do so in my opinion.Take care x
Kim I would look for a new doctor! My hematologist suggested putting me on HU and because I had done my research on the drug, I right away told him that my dad died of melanoma and I too have had lots of moles removed (one with melanoma-caught early) He wasn't going to look at other options for treatment. I had to advocate for myself and suggest Pegasys which he had no experience with. The last thing we need is to get another cancer!
I am working on it. I have made a call for an appointment but they want my most recent records from my current hem/onc, first. That is in the works. Thanks so much for your reply!
I have had several moles removed and a huge on on bridge of my nose at stage 1 I have many more on my whole body and several removed at stage 1Been on HU 500mg 6 days per week for about 4 years now
Family history of melanoma - sister with stage 4
Live in AUS cover up out in the sun and use a sunscreen face moisturiser daily but burn easily
I’m concerned after reading all of your experiences with HU and melanomas
Hi Nedkel65I have read more about it and found that the risk is for non-melanoma skin cancers. I would say that at least a yearly visit to a dermatologist is in order for a good inspection of the skin and scalp.
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You should get a new doctor just because you don't feel confident about her, even if she is/is not a good doctor. We need to feel right about our health professionals, just like with counsellors, you need to have a level of feeling comfortable and trust that you will be treated with care and empathy. So if it isn't feeling that way and you can go elsewhere, do so in my opinion.Take care x
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HU or Peg as 1st line
