Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hi all. I'm two years 5 months post SCT and although I've had my ups and downs, life is close to normal and we actually made it to Italy.
The not so good news is that even if you follow normal sun exposure protection, it may not be enough if you stay on our meds.
I had a fast growing carcinoma in my left ear and had surgery last Thursday. It was big and invasive. Next week the margin cartilage biopsies come back. If positive, I will lose an ear.
Not a train smash, compared to surviving AML and making it to Italy. However it may have been prevented.
Buy a Tilly hat and WEAR it. Avoid sun exposure and see your dermatologist often. Make them pull the scabs and see what's going on underneath.
Cheers
Jon
The not so good news is that even if you follow normal sun exposure protection, it may not be enough if you stay on our meds.
I had a fast growing carcinoma in my left ear and had surgery last Thursday. It was big and invasive. Next week the margin cartilage biopsies come back. If positive, I will lose an ear.
Not a train smash, compared to surviving AML and making it to Italy. However it may have been prevented.
Buy a Tilly hat and WEAR it. Avoid sun exposure and see your dermatologist often. Make them pull the scabs and see what's going on underneath.
Cheers
Jon
What a terrible thing for you to have to deal with after all that you've already endured between AML and the recovery from your SCT! I am shocked to know how dangerous and immediate the threat from sun exposure seems to be; is that a function of the chemo, the transplant , or the drugs that are required at this point in your care? Whatever the circumstance, I sure am sorry that you have to go through this. I do want to thank you for your thoughtfulness in sharing this information with the board - I am certain that you've done more than a few members a tremendous service by sharing your story with us! All the best to you as you heal.
Robin
Thank you for the post. I am about 1-ye post transplant. I am on minimum Immunosuppressants. At the beginning, I had skin rash at forehead and back on and off. Now it's all clear for that last few months, however your post is a good reminder. I shall continue to be more aware of sun exposure. Thanks.
Violet
you are absolutely wonderful for posting this to us all having had or about to have a transplant. It is a lesson to us to all be vigilant in our post transplant care. Thank you for thinking of all of us as you go through this. Sending love and support and the best outcome possible. I know I have some tendencies to feel invincible and "get back to normal' but you have reminded me there will be a new normal that I must adhere to. Thank you.
Ed
Ed
The h..l with the ear. Living your life is far more important, and I am not being facetious. I am really afraid of the sun after getting TBI and the not so funny thing is that I have a scaly lesion "where the sun don't shine" that I have decided to show to the dermatologist. I always slather with sun screen and the new ones are not greasy at all (esp. Neutrogena). For the first year post-transplant, I wore a hat, even when my hair grew back. I really need to start wearing an SF Giants hat (yes, my father used to go to the NY Giants baseball games as a child and we are now all converts.
Be well.
Cliff
Nicole x
Question, does anyone have suggestions on sunscreens? My skin has been so ultra sensitive since chemo and my meds.
I am so thankful for this post. Every suggestion is taken seriously. Thank you a million times over.
Peace to all,
Andrea xoxoxo
Thank you so much for the warning, I do not think I was taking it seriously enough! I have a hat, but I need to get one with better coverage. Congratulations on your Italian trip! Hopefully all goes well with your biopsy, I am tired of biopsies, but it is all part of the process.
Andrea~ I love the hat, it looks great. I need to find one for me :) The best sunscreen I have found so far is Neutrogena sensitive skin. I have always had sensitive skin, so now it is even worse.
Appreciate everyone's comments and advice, as always this site is so helpful!
Take Care,
Suzanne
Have I said too often how much I love this forum?
(and all of you!)
--Tina
You look "mah-velous" with that hat and specs. Definitely DIVA material.
Neutrogena makes some really good lotions that go on sort of dry and do not make you look like you are at the beach. I got mine at Costco. They also make a nice spray, if you are wearing shorts or short sleeves. I went through most of my life with a perpetual tan, because I am truly a beach person. Now I am more of a well-basted (with sun-screen) sun avoider, although I am still happiest when the sun is shining and the days are long.
Love to you and John,
Cliff
Hope that biopsy comes out negative.
Andrea, I must say, you do look like a movie star. :-)
Jon, hope your trip to Italy is awesome.
lily
I believe that the cause of all of this is long term taking of Vfend (vorconozole). It's an expensive drug given to prevent fungal infections. My doctor pulled out some abstracts of studies that show long term use can cause these problems. He has suggested Noxifil, but when I return to New Zealand, I doubt if they are going to fund a $5k per month drug. There must be an alternative.
Still, all and all,we are a group that has to watch out for sun damage.
I'm wearing my Tilly hat every day now.
Cheers
Jon
What great news! I am taking fluconazole. I was on vorconazole, but it interfered with the cyclosporine levels, so it was changed. Are all of the 'Azoles' in the same category I wonder? Having read your story I am so conscious of the sun. My biggest challenge will be in a few weeks when I will be at the beach. The last time I was able to go, I was a sun bathing queen, so my 40+ year habit will need some adjusting.
Be well and good luck with the remaining lesions.
Andrea