Sorry if this is a bit obvious but can anyone ... - CLL Support
Sorry if this is a bit obvious but can anyone tell me why you may want pneumonia vacs?
Good on you for being brave enough to ask what many are probably wondering...
To be rather blunt, because pneumonia is one of the common causes of death if you have CLL! As CLL progresses, our immunity suffers, so we catch illnesses more frequently and they take longer to resolve. Basically we need every edge we can get against dangerous infections. The vaccinations only provide cover against the more common bacteria that can cause pneumonia and they are less effective as we get older and our CLL progresses, but I know I'd rather have perhaps a tender upper arm for a few days compared to ending up in hospital and may be not coming out alive.
Neil
thanks for this and CLLcanada response - Do you know is the advice the same in Uk? my partner developed a really bad chest infection and cough which was quite debilitatating during his last chemo and it took nearly a year (with various drugs to get over it). No-one suggested pneumonia vaccine. 2 years later his wbc have now started to double and has been advised will probably be needing chemo again in next 6-9 months should he be getting the vaccine now and if yes which one?
Sorry to say this and be grim for a moment, but I'm a familial case of CLL and can vouch first hand for Neil's answer.
Just had my first Pneumonia jab - sore arm for a couple of days, feel grotty, and sweaty at night (think that will go now - feel ok today).
A small price to pay for potential benefit down the line.
Thanks everyone for the good advice (also the flu jab)
Ernie
The recommendation to the CDC in the U.S. for immunocompromised patients is to have the child's vaccination first, followed by the adult version.
More here... might print this out for your doctor.
Do you know is the advice the same in Uk? my partner developed a really bad chest infection and cough which was quite debilitatating during his last chemo and it took nearly a year (with various drugs to get over it). No-one suggested pneumonia vaccine. 2 years later his wbc have now started to double and has been advised will probably be needing chemo again in next 6-9 months should he be getting the vaccine now and if yes which one?
Immie
the latest UK information we received on this was from an expert CLL clinician in Southampton who informs us.
a CLL patient on "watch and wait" should be brought up to date with the pneumonia vaccination . the thinking is that as CLL people may not mount a good response the longer we leave it the less strong it's defensive effect. We were advised in CLL that is every five years. For that same reason we are recommended to be given the conjugate Prevnar version of the vaccine as we may mount a better response . You may have to push for this as few GP surgeries are fully informed about CLL needs. Get a letter of recommendations from your consultant this may also help,. This advice does seem to vary a little..
Of course a CLL patient must also receive the annual flu jab, also people living under the same roof too that will prevent them bringing it into the house
.Also Menitorix (HIB and MenC) vaccine is recommended for CLL patients.
here is a recent discussion here healthunlocked.com/cllsuppo...
brilliant thanks for this. my partner is booked for his flu jab but the surgery has said I'm not entitled even though the letter they sent us last year said that I should be vaccinated! one does wonder whether funding may be an issue
I had my flu jab today as did my wife, my son will get his once he gets over a current cold. We have all had the vaccination, not qualifying through age, but because I have CLL this has been done for the last few years now.
There are certain NHS issue's that are different between here in Scotland and the rest of the UK, but your letter saying that you should be vaccinated seems to be exactly the same policy exists throughout the country.
Just found this ....a household contact of an immuno compromised person ..... is advised to get the flu jab .... creffieldmedicalcentre.nhs....
My wife and daughters were given the flu jab today by our GP surgery there was no issue. It is accepted that immune compromised people benifit from herd immunity by vaccinating those under the same roof with the annual flu vaccination. I live in Wales the poorer nation!!
Anyone living in the same house should have the flu jab each year - your Dr should agree for you to have the jab if it is explained. We have both had the flu jab since being diagnosed. There has been no issue of funding - nor did we have to ask Dr - though they may have confirmed with Dr behing the scenes. Certainly adverts in surgery is for thos over 65 and anyone at risk. Need to avoid anyone who has had the nasal spray vaccine for a few days as this is a live vaccine and often given to children.
Had non conjugate pneumonia jab when diagnosed - have agreed with Dr that I will have the conjugate jab when I am due my 5 year booster. As the non conjugate pneumonia is the norm in the UK - the conjugate dose will have to be requested and got in for you.
thanks everyone our practice said I did not qualify for flu jab my partner had his on saturday and again asked the GP why i also wasn't being offered the flu jab - apparantly they don't think it necessary as he no longer having chemo! he advised GP risk if partner gets flu and aslso consultant has advised he will be back on chemo within the year and GP had no comment but finally said ring practice and put case forward this week to see if they will give me flu jab! will also now start to push for the pneumonia vacs for partner
You are entitled, and do qualify through the NHS.
The flu vaccination Winter 2013/14 ....... Who should have it and why. ..... creffieldmedicalcentre
A household contact of an immuno compromised person ..... is advised to get the flu jab .... I am on W&W, never had any treatment for CLL, and am entitled, along with my wife and son, who live with me..
Your partner is still immuno compromised regardless of any chemo treatment.
ygtgo is right. It seems to me that your practice does not understand that by its very nature, CLL is a cancer of the immune system and hence if you have been diagnosed with it, then you are immune compromised even if you haven't had chemotherapy. Further, it is well recognised that chemotherapy can leave those with CLL even more immune compromised than they were prior to chemo - that's one of the reasons for Watch and Wait! It can take, months, even years for immunity levels to improve after chemo, with some never seeing a significant recovery.
You might be tempted to find a more understanding practice and perhaps you should investigate doing so. Sadly, CLL is poorly understood by most GPs, so it is not unusual for (patient) patients to educate their doctors.
I hope you get this issue resolved to your satisfaction - it is frustrating to face such roadblocks when you are trying to do the right thing healthwise.
Neil
Thanks everyone will send an update as soon as all resolved
