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Anyone with Myalgic Encephalomyelitis?

7 REPLIES 7
whatisdharmakaya
Member

Re: Anyone with Myalgic Encephalomylitis?

Just wanted to report my chemo ME experience.

 

Im having EC 3 doses over 9 weeks Then docetaxel 3 over 9 weeks.

The first EC was 80% dose. Using powerchair saves energy so I could talk 2 hours as normal.

 

2nd dose I demanded to try 100%. My talking went down to 1 hour but quickly rose up. I didnt get an ME reaction after talking 1 hour more a need to rest so my body could fight a chest virus with low white blood cells.

 

3rd dose was 80% and same as dose 1

 

then 4th dose was 1st docetaxel 75%. The much higher dose of steroids has caused red cheeks and aching jaw but my MEis unaffected so far 24 hours in.

BizzyLizzy
Member

Re: Anyone with Myalgic Encephalomylitis?

I can talk for 5 hours 

my fatigue level was reasonable before my diagnosis I was functioning at 60-% 

i have had ME for 29yrs it was very bad for the first 5 years where I needed to use a wheelchair 

since then I have had three major relapses and been housebound then improved each time and was working part time till my diagnosis .

i have had 7 viral infections since last June 2017 and therefore I am terrified as to how my immune system will cope with Chemo 

 

liz  - I will check out your blog 

whatisdharmakaya
Member

Re: Anyone with Myalgic Encephalomylitis?

whatisdharmakaya
Member

Re: Anyone with Myalgic Encephalomylitis?

Because theres no info online Im going to make a blog on Youtube of how my ME responds to the chemo.
I measure the severity of my ME by how long I can talk for.
If I use a powerchair as much as possible I can talk for 2 hours. If I dont use a powerchair it would reduce down to one sentence unless I led a very restricted life.

How long can you talk for Bizzylizzy?
whatisdharmakaya
Member

Re: Anyone with Myalgic Encephalomylitis?


@Anna_BCCwrote:

Dear whatisdharmakaya

 

Sorry that you havent recieved any responses yet.  It may be helpful for you to talk with one our specialists on our free Helpline, 0808 800 6000.

 

Alternatively you can post your questions on the Ask Our Nurses area of the Forum where they can reply to you online.

 

Best wishes
Anna
Digital Community Officer

 


Sorry but I need to talk to someone who has ME and cancer. Medical professionals dont have knowledge of ME because research hasnt established what the malfunction in the body is caused by yet.

BizzyLizzy
Member

Re: Anyone with Myalgic Encephalomylitis?

I have ME 

i have has surgery lumpectomy and Sn removal but then they found cancer in the nodes and repeat the surgery removed 9 more with one affected 

I am also worried about how my body will cope with the Chemo and if it will bring on a major relapse and if it is worth the risk to my already poor immune system 

I have yet to see the onocologist but at present unless there is a large % benefit I will not have it 

will have Radiotherapy even the drugs - the Ines we need for 5 years worry me too.

me ME is much worse after two lots of surgery so I dread how the rest of treatment will be 

Anna_BCC
Member

Re: Anyone with Myalgic Encephalomylitis?

Dear whatisdharmakaya

 

Sorry that you havent recieved any responses yet.  It may be helpful for you to talk with one our specialists on our free Helpline, 0808 800 6000.

 

Alternatively you can post your questions on the Ask Our Nurses area of the Forum where they can reply to you online.

 

Best wishes
Anna
Digital Community Officer

 

whatisdharmakaya
Member

Anyone with Myalgic Encephalomyelitis?

Hi Im wanting to know what effect chemo had on your ME. Does it make ME worse in itself or is it other things that affect the outcome eg vomiting, travelling, sitting in a chair for hours.

I need to know the relationship between the chemo chemicals and ME within the body ie if the chemicals themself do damage to make it so you have a lower tolerance for activity.

I am being offered the red devil (EC) max dose every 3 weeks 3 times then docetaxel (taxotere) every 3 weeks 3 times.

My ME is such that I can currently talk for 2 hours before exhaustion

Thanks for your help this is really important. Without chemo my chance of recurrance & lifelong cancer increases from 39% to 55%