HES/GLEEVEC- SO AFRAID

My 36 y/o son has recently been diagnosed with what they think is HES. He is now on 400mg Gleevec and on 14 mg of prednisone which they have been reducing as the Gleevec increased. His first follow up MD appt with oncologist from Mayo since Gleevec started was last week, and his eso's are at 14( not sure what that # represents), but is an increase from his number when taking a higher dose of prednisone alone. Initially his count was up to 75 when attempt to diagnose. Mayo is doing a case study on him as they have never seen eso's/case like his, but he is not seen again for a month. Is anyone out there on Gleevec, or had a similar experience? He is selling all his "toys" as to not leave his young family with debt, and I am so afraid we are going to lose him.
Anyone with advise or experience?

Edited August 28, 2013 at 11:03 am

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My hearts breaks for you. I am so sorry your family is going through this.

I assume you've already been through the information on the website but will post it just in case you didn't find it:
http://apfed.org/drupal/drupal/treatment_of_HES

Webinars on HES are linked from this page:
http://apfed.org/drupal/drupal/webinars_and_videos

Clinical trials for HES are listed on this page:
http://apfed.org/drupal/drupal/ClinicalTrials

I hope you find answers to your questions.

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Try to get an appt with Dr. Amy Klion who is the lead researcher at NIH in Bethesda MD for HES. I have heard she is very good. Anti IL 5 trials are going on here and your son might be a candidate. Also who did you see at Mayo?

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I'm about to start gleevac did you have any side affects?

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My son just turned 44 and also has this problem. I am 69 and also have the same problem. Your son does not have to sell all his "toys". I know this is a frightening problem and much suffering is done. I was probably in my thirties when I first started to have problems. I was not diagnosed until 2002. Prednisone seems to be the only thing that works but since I have osteoporosis that is becoming a problem. Just had one of the worst flareups I have ever had. After 2 1/2 months it just left as quickly as it came. Since I am caregiver for my Husband with Alzheimers I am beginning to believe there is an emotional component to this problem. Stress can surely kick off something in this mix of whatever makes this happen. I live in New Jersey and there seems to be no one who has a clue how to treat this disease. I have also lived in other states and they do not seem to know anything either. So glad I found this site. Good luck to your son and tell him to get some help with stress. It may help.

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Don't be afraid.... I was too.... but it will be o.k.... really it will. What are your symptons with HES?
I take Hydrea 500 mg everyother day and 1000 mg the day in between and 10 mg prednisone everyday...
How did he discover that he had it.... and what exactly are his symptons?

Shelley

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I take Hydrea and Prenisone... which has lowered my EOS count

Shelley

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Thank you so much to everyone that has answered me!! I don't feel so alone!! I do not know the name of my son's oncologist at Mayo in Rochester Mn, but he is one of the few specialists for HES. Luckily we live in Wisconsin so it is only a 4 hour trip for him. Their network of physicians have never seen eosinophils like his, so he is a case study now. He is taking 400mg of Gleevec and is still decreasing his prednisone, and is at 14 mg now. His physicians are not sure of his diagnosis but say he has either chronic eosinophilic leukemia vs HES, and his next appt is 9/19, so we will see how his counts are reacting. His last counts a month ago were still high. He was told the Mayo Md's have never seen such high numbers of eosinophils before even though they are the specialists, "place to go". He has a very stressful job and tries to work through his nausea and pain but at times needs to just rest. He has pain in the large bones of his legs, his back, sweats, shakes, and "flu like" symptoms. When he began Gleevec he would be very nauseated and "sick", and needed to take higher doses of anti nausea and pain meds which he still needs daily, some days more than others. My son has always been very active, has a heart as big as his body and a wife and 2 young children. As a mom I wish it was me, it makes my heart hurt to see him struggle and so sick. I am so glad I have found all of you, and will also talk to you individually. Maybe together we can help each other, Patti

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Hi to everyone that wrote to me,
First thank you so much for your replies. My son Dan has labs drawn on 19th at Mayo, he does not believe the Gleevec is working. He is feeling progressivey sicker with his meds right now: Gleevec 400 mg, Prednison at 14 mg on a decreasing schedule. At one time his Prednison was at 100 mg before Gleevec and that started to bring his counts down. Mayo clinic in Rochester has never seen anyone with counts as high as his, at one time the docs told us they were at 75 (?), not sure if 75,000 or 75%. He is constantly coughing, has night sweats, back and leg pain and feels as though he has the "flu". He has tried to work through his symptoms and continue to work which is a very stressful job and is on the road most of the time. We will see what his next oncology appt shows, they still are unclear of his diagnosis, HES/Leukemia, with his counts and cell appearance never seen before by the Mayo physicians, thus doing a case study on him. I get strength reading your replies and entries, I am so afraid we are going to lose him, As a mom, I only wish it was me, Patti

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Hi Britishgal,

I'm in the UK as well. what is your diagnosis as you are starting on Gleevec?

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I am sorry to hear your worry and your son's struggle. I was diagnosed with HES around 2 years ago at Mayo. I had constant symptoms for a year and off and on even before that. I would get tightness in my throat. Swollen lips. Hives. Joint Pain. Severe muscle pain in my shoulders and legs. GI upset. Abnormally swollen eyes that were painful. Cough. Fatique. Deep tissue edema. I would just swell up for no apparent reason (well, I know now the reason). Chronic sinus infections. It was such a mystery and I feel now after researching and reading all that I could find, I finally feel I have as much understanding of the disease as I'm going to get. I feel with the rarity of it, our instincts and knowledge of our own situations are just as good as some of these doctor's educated guesses. The biggest decision now is understanding best treatment options. Just have to get those counts under control.

What else have you learned on your recent visits? What meds have your son been put on? It is a scary situation, but don't lose hope!

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