CMML

[Kathryn]

Hello. My father has CMML (dx. this past summer) & I am in need of info., insight & support. I read on another board that this might be a good forum for info. & support. It appears to be a rather rare diagnosis.

My father developed Thrush from some meds. & his throat is extremely sore. The doc. gave him a med. for that. His sinus’ had become congested so he went to an ENT and diagnosed him w/ a sinus infection. I am not sure that he had typical sinus infection symptoms, but is to go back for a CT scan in a couple of weeks. In the meantime, he is on Thalidomide (4 pills) that apparently isn’t working effeciently, so the doc. is planning to start chemo injections tomorrow. On for 7 days, off for 4 weeks & on again for 7 days. He is feeling extremely bad still and is very weak, but still able to get around. I think that if my stepmother didn’t keep him moving, he wouldn’t. The doctors said that his other health issues won’t interfere w/ his chemo this week. If he is already feeling so bad….how will he respond to the chemo? I haven’t heard of injections before, can anyone give me any info. on this?

Anyway, I was just hoping for some insight as to what is possibly going on w/ him and what I might be able to expect and could do to help him.

Thank you so much for your time.

Best wishes,

Kathryn

[Kathy G]

I sounds like they are going to use Vidaza for your Dad. My Dad has MDS & evolving CMML and he will start his 4th round of Vidaza tomorrow. It seems to be the drug of choice for CMML. Dad has done OK with it so far – the last 2 times he has ended up with an infection during the course of treatment but been OK. He had a problem with the injection done in the stomach area – they bled a lot and developed blood blisters. If you search this board for Vidaza you will find some add’l info on the drug that might help. There is a lot of helpful info on this board.
Best wishes for you Dad – this is a tough disease. Post any questions you have – this group seems to know a lot.

Kathy G

[Kathryn]

Kathy,

thank you so much for your reply.

I believe you are right. I looked at some info. on Vidaza and it sounds like what he will be getting. His injection site is to be in the back of his upper arm and he will receive an anti-nausea med. beforehand.

Do you know of anything I can suggest to him that might ease his discomfort?

Kathryn

[Kathy G]

With my Dad they moved the injection sites each day he gets the shots. Good that he is getting the anti-nausea meds – it helps a lot – my Dad hasn’t had any problem with nausea. He does have a constipation problem with the anti-nausea med and others have too. Some have suggested Aloe Vera on the injection sites (later in the day after the shots) but Dad hasn’t needed to do this. He ends up with bruises and after a couple of days he is pretty tired.
Hopefully some others who know more will post – it’s Easter so some maybe taking a break today.
Where is he getting his care?
Keep posting on his progress.

Kathy G

[eve]

kathryn

my dad takes most of his vidaza shots in the belly (different spots, because the same area should not be injected twice during the week- he finds that it hurts less there for him – please double check with your dad’s hemodoc to make sure that he can take the treatment if he is suffering from an infection – the medication drops all the blood levels and if there is an infection in his system he might run into trouble – when my dad had a sore throat they postponed his treatment until it was completely gone (with the help of antibiotics)

also for the constipation problem caused by the anti- nausea pill – my dad has experimented and found that he really only needs 1/2 pill to help him with the nausea – that has helped the constipation problem greatly – but that might not work for everyone

wishing your dad good luck

eve

[Kathryn]

Hey, I can’t tell you guys how much I appreciate your input. My prayers go out to you and your fathers.

We live in Atlanta, GA and my father is receiving his care here. He conveniently lives right down the street from the hospitals & doctors.

He had a little bit more energy this a.m. and his appointment is after lunch. We will see what the doc. says about his sinus infection and sore throat. From what they said before, that would have no bearing on his treatment. He will also be receiving IV anti-nausea med. prior to getting the injection. I think the doc. was expecting him to be a lot better since he has been on the antibiotic, etc. though.

I am really nervous and am so thankful to have some people to turn to for support. I’ll keep you posted.

Hope your day is a lovely one,

Kathryn

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