Hi everyone. CMML question

[AngieR.]

Hi everyone…I am new to forums so please bare with me…My Dad (62) was diagnosed with CMML in Aug. 05. He is on weekly Procrit shots, 300 mg. Thalidomide daily, and blood and platelet transfusions almost every 2 weeks. Nothing seems to be working. His Oncologist wants to start intense Chemo but hasn’t said when. My question is: Does ANYONE have any info on other treatment options they have underwent and are willing to share. If any other info is needed I am more than willing to share. Hope to hear from yall soon on this. Have a great day everyone.

AngieR.

[CarolineG]

Hi AngieR.

You came to the right place for help with your Dad. You will receive a wealth of information from the people on this forum.

I did not know that they do chemotherapy when Leukemia is still in the Chronic phase. I will be curious to hear what others have to say. My Dad also has CMML and gets Procrit/(Eprex in Canada) shot once every week.

Blessings,
Caroline

[AngieR.]

Hi Caroline, Thanks for replying. I do hope to gain some info from anyone who can relate. I spoke with my Dad tonight and after his CBC today his hemoglobin was up 8.6 to 9.9 and his platelet count went up from 10 to 16. His Dr. swears by Chemo but my Dad isn’t gonna do it. He is hoping to get in somewhere like M D Anderson in Houston Texas or a new cancer facility in Savannah Ga. and see what his options are there. It just seems there isn’t much available on CMML or either we are searching in the wrong place.

[Suzanne]

Going to a center of excellence is the best thing you can do. If you call the AA & MDS International Foundation, they may be able to tell you where the most research is being done on CMMLor how to find the best place to go. 1-800-747-2820

[AngieR.]

Thanks so much Suzanne. After reading your comment I called and got some very helpful info.
Thanks again.

Angie

[CarolineG]

AngieR.

When you phoned, did they say anything about using Chemo on CMML patients? I would like any information that I can get for my Dad.

Caroline

[AngieR.]

Hi Caroline,

They didn’t say anything about it but my Dad went to his Oncologist today and they are gonna start Chemo this coming up Wed. and CMML is what my Dad has. Has your Dad asked about Chemo?…I will talk to my Dad Fri afternoon and find out some more info and get back to you here.

Angie

[Kathryn]

Hey Angie, I am here in Georgia also. My father had CMML & was on Thalidomide, Vidaza & then his oncologist put him on Trisonex, which he said seemed to be working. The Trisonex is commonly used for older patients when there are no other options. My father wouldn’t have been able to handle the “heavy duty” chemo.

Who is your father’s oncologist and where is he being treated? My dad’s doc. is over by Northside Hospital in Atlanta, so that is where he was being treated. I agree that going to a center of excellence is a very very good idea. I think my dad was the only CMML patient they had….it seems to be kind of rare and he needs someone who is more than familiar with it.

If you ever want to contact me, please feel free to. I will answer any of your questions I can.

Best wishes & prayers for you and your dad,

Kathryn

[sugarwhale]

Dear Angie,
I can’t tell you beans about CMML. My mom has CLL. However, I DO know that they use chemo (Rituxan, in my mom’s case) for CLL. It’s gentle chemo. My mom had no ill effects during or after the Rituxan. She went to sleep and did crossword puzzles! ‘Hope this helps!
~~~ Janet

[AngieR.]

My Dad’s Oncologist is in Albany at Phoebe Putney, I am familiar with Northside Hospital, and I am certain your Dad is getting very good treatment, and seems to have a very careing daughter.. My prayers for you and your family aswell Kathryn. I so wish they could try something different other than the Chemo, but his Onco feels there isn’t time, so we just have to trust him. He seems to be a very dedicated Dr. and to my parents, aswell as myself, that makes a big difference in how a patient is treated. I would love to hear from you as my Dad can use all the info he can get aswell as someone else in his situation. Thanks so much for your reply and hope to hear from you soon. The same to you, best wishes and prayers for you and your Dad.

Angie

[AngieR.]

Kathryn, I just re read your post and I am so sorry about your Dad…I feel like a total nut job now being I sent prayers for your dad, but hey…Angels can always use them to right. . Please accept my apology for not reading thoroughly and realizing the passing of your Dad.
Big Hugs and hope to hear from you soon.

Angie

[Kathryn]

Oh Angie, please don’t worry… Prayers are appreciated and are good no matter where your spirit resides! Big Hugs back to you…

Your father is quite a bit younger than mine was, plus my dad had other health issues that had to be taken into consideration, so anything stronger than the Trisonex was too risky…. They had been waiting, for what seemed like an endless amount of time, for a new trial drug but by the time it became available, his blasts were too high. For a while his CMML was progressing slowly and then it starting picking up speed.

I think that his down fall though was them (my dad, his wife, the docs.) not being intune enough with the messages his body was sending… Of course, it was also up to my dad or my step. to speak up. The doc. doesn’t necessarily know what you don’t tell him. For example, and I belive this was so neglectful, but his platelet count was quite low and, excuse my by being frank, but he was bleeding a lot rectally; they fluffed it off to having hemorrhoids…My sister and I were very very concerned about this, but were forced out of the loop by my step. and couldn’t advocate for him. Once it appeared bad enough,the doc. put him on antibiotics for a “bladder infection”, though there was little sign of one… The pressure he was feeling on his bladder was from an abcess on his colon that was quite swollen and infected…. This wasn’t diagnosed until it was too late…. My reason for telling you this is to make you aware…. no question is unreasonable. Everything, no matter how small, should be addressed……

Also, if the doctors have anything negative to say, let them tell your mother & you first… Keep his thoughts positive. It is hard enough just being the patient.

Angie, this forum is a wonderful place for support and information, so please stay in touch and if you have any questions, we are all here for you…

With prayers & best wishes,

Kathryn

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