hello everyone, i always read the site but very rarely write. my husband has been diagnosed with cml since 2006. he is not in remission. lately he has been suffering with infections ear etc now he has been diagnosed with shingles which i know is rare on both sides of his body? should i be worried or is this just normal for his age of 45? thankyou for your time.
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hi
Hi your poor husband Shingles is rotten to have,Its related to a low immune system for CMLers( hence other infections) other people get it from stress.
Its worth thinking about getting treatment from a CML specialist unit(if your not already at one,the advantage being you can contact a CML specialist nurse who can advise you about just about everything)
Antiviral medicines would help him at the moment.
hi Belinda, Can you please let us know where your husband is being treated and which therapies he is being treated with. If he is taking Glivec at 400mg/600mg or 800mg what level of cytogenetic response if any does he have?
Shingles is not something that he should just tolerate- it is not normal to have to endure this as it can and should be treated with anti-virals at a CML specialist centre.
Best wishes,
Sandy
hi everyone thankyou for all your replies about my husbands shingles. he is on gleevac 400 mg so takes 4 tablets a day. he has been given aciclovir 800mg to take one tablet 5 times a day aswell as gentisone ear drops. my husand never asks his treatment centre for advice he always goes to his general gp, is this the wrong thing to do as you all say about going too see his oncologist?? he is being treated at macmillan unit inside mk general hospital.
Hi Belinda,
In my opinion that the best advice would be for your husband to have all his treatment at a specialist CML clinic. It is not a question of seeing an 'oncologist' as such, which is a general term for a clinician who treats 'cancer' -of which there are over 300 types.
CML is a 'haematological proliferative disease' and comes under the general umbrella term of 'cancer' -- so he needs treated by an expert in this particular disease if he is to make sure he has an optimal response and to ensure this by being monitored correctly. Shingles should be treated in the context of his having CML. It might well be that an expert haematologist who is knows how to treat CML would also treat this attack of shingles with acyclovir- as his GP has, but his overall white count should be tested in order to understand why he is suffering from shingles and to decide whether he needs a stronger anti-viral drug to deal with the problem more aggressively.
Your husband is not in remission you say? Can you clarify what his response is? Has he had a cytogenetic response? If so how big?
All this would factor in to how his shingles should be treated and whether he is getting the optimal treatment for CML.
I am not sure where mk general hospital is... what region are you in?
Best wishes,
Sandy
thankyou sandy for your reply. my husband goes once a month to the macmillan unit in our local hospital, we live in milton keynes buckinghamshire. he has his bloods taken at this time by a nurse. he see,s his dr once every 6 months by dr i mean his cancer specialist. i asked him about his pcr but he is not sure but next time he goes i will get him to write them down for me. thankyou for your advice though as in future i will make sure macmillan will be his first port of call because of his cml.
Dear Belinda,
I am surprised your husband in monitored only every 6 months. The recommendations as they stand at the moment are that patients who are in chronic stage CML should be monitored (bloods taken and pcr test done) every 3 months. As your husband is not 'in remission' -which I take to mean that he does not have a CCR- complete cytogenetic response- I would suggest that his appointments should be every 3 months. I would also suggest that his GP refer him to an expert CML clinic for 'shared care' with his local hospital. Milton Keynes is not far from London where there are 2 very good CML centres, Kings and Hammersmith.
This would mean that the fact that he is not in remission would (and should) be investigated by clinicians who are expert in treating CML and his therapy might well need to be adjusted or changed from imatinib to one of the other drugs (nilotinib or dasatinib) in order to encourage a deeper cytogenetic response. They would also be able to treat his shingles.
I hope you can encourage him to get a referral. In my opinion it is important to see an expert in CML if at all possible- even if it is for 'shared care' with the local hospital.
Best wishes,
Sandy
Hi Belinda Can I reinforce Sandys comments about best practice. I am so pleased I took a second opinion at Kings hsp, and am now seen there every 6 weeks. I see either Prof. Mufti or Dr Ho, both hematology/oncology experts, both CML specialists. The specialist centres are right on the ball with the most upto date testing, and most importantly the most upto date information on treatment.
Its nearly 9 years since my diagnosis, and I am about to change to the 3rd TKI. It is beyond doubt that I would still be floundering in high level PCR, and terrible side effects on Gleevec, if I had stayed at my local hospital.
While its difficult to ask for a 2nd opinion, and you both might worry about 'upsetting' your current treatment centre, please do remember the CML patients interests MUST come before any other.
Hope you are able to see a specialist in CML soon.
ATB
Pennie.