14 replies to this topic

[Susan61]

Hi:  I think this may have come up quite awhile ago, but this past year there has been so many cases of Shingles.  I have read that anyone who has Leukemia should not get a Shingles Vaccine.  I believe it was due to a compromised Immune System, but if we are doing well on our TKI drugs is it okay to get the vaccine? 

     Has anyone in our group gotten the vaccine?

[Judy2]

Hi Susan,

I'm not sure if we can get the vaccine with CML but even if we can we have to be at least 60 years old, at least this is what my dermatologist told me (finally, I'm too young for something).

Judy

[lymphomajourney]

May be different in my case (MCL post allo SCT) but my doctors keep me on Acyclovir to reduce the risk of shingles. No discussion of vaccine (so maybe I should raise!). Am of course getting all the other vaccinations (revaccinations). Andrew

[hannibellemo]

Hi, Susan,

I've always been told the opposite - we do not necessarily have a compromised immune system with CML. That said, I was also told to avoid vaccines containing live viruses, nasal flu vaccine and shingles vaccine. I got the pneumonia vaccine this year and felt horrible for 3 days. Wish I'd had a warning about that!

Pat

[susantheresa]

Hi Susan,

I dont know if this helps you but the protocol for post sct are vaccinations.  All of them as if we were children.  I received MMR, (measels, mumps, rubella) Polio, dyptheria, tetnus, influenza, pneumonia and was kept on Acyloveir for two yeas.  That was because I carry the CMV virus that even after transplant, that remains.  Thats the virus responsible for herpes simplex (shingles) I was informed that the shingles vaccine shouldn't be given until we are in our sixties.That I guess is the high risk population. I remember while I was getting those vaccinations, jokeing with my Doctor telling him wouldn't it be strange if I was the first Woman to be revaccinated and wound up with Autism.  That was just in reference to the hoopla surronding vaccinations and Autism.  i have gotten a flu shot every year since 2005 and I think they combine flu and pneumonia and, I haven't gotten anything but a chronic sinus or upper respitory infection. Remember what works for one doesn't always work for another.  Become informed, talk to your Doctor and make your own choices.  Hope that helps.  Susan M

[Susan61]

Hi Billie:  Thank You for asking how I am doing.  I have been okay.  The reason I asked about the Shingles Vaccine is because it has become a leading topic lately with so many cases popping up.  I am not planning on getting one, even though I know I do not have a compromised immune sytem at this point.  I did start to do the Pneumonia Vaccine after having Pneumonia twice.  I also do the FLU shot each year, and I have not been sick now for a few years.  Not sure if the vaccine helped or I just was not exposed to some of these viruses. The one year when I got the Pneumonia shot and the Flu Shot together I was deathly sick, you  might remember that.

     Funny that you should mention being immuned to childhood diseases.  When my daughter was very young, and all her friends were getting chicken pox, measles, and mumps etc.  She never got them.  She even slept in the same bed with a little friend of hers at a sleepover.  The kids who were at the sleepover got the chicken pox, but my daughter did not.  They did a blood test on her at some point to check her immunity, and told her she was immune to these diseases.

I never heard of it, but she is now going to be 39.  She has not gotten any of this stuff Thank God.

    Just thought I would see what others felt on this question.

Take Care

[Susan61]

Hi Judy:  I am not too young for anything anymore.  I will be 65 in November.  Hope your doing good.

[pamsouth]

Hey Susan61

I was 64 last jan 1st, so you are just a month or two older then me! 

I will be so...... glad when I reach 65 years, I am counting the months, weeks and day, I will finally be able to be on Medicare.  The Blue Cross UAW RETIREE OF Mi sucks.  My husband is on Medicare and it is not confusing, like Blue Cross, Bl Cross has a habit of changing their minds on a number of things, and you have to constantly call them.  I know most people don't seem to like federal health care but Medicare has been good to my husband, who is 70 years.  Outside of his arthritis he is doing good, even works part time.  As long as he watches what he eats and exercises he doesn't have to take his diabetic pills.  He rarely takes anything, Lucky Guy

I like the way you said "I am not too young for anything anymore".

Isn't that odd here you have CML and your daughter was exposed to the childhood disease and the doc said she was immuned!!

pamSouth

[Susan61]

Hi Pat:  As for my immune system, my doctor said as long as my numbers were in the range they are that I did not have to worry about  my immune system. I do avoid being around sick people etc.  I forgot that I was also told no nasal flu vaccine because it was a live vaccine.  They never told me no Shingles Vaccine, but like I said I am not gettin it anyhow.

I feel that way about all these other drugs that they keep coming up with for Cholesterol etc.  They have something for whatever ails you, and I do not trust any of them.  As for the Pneumonia shot I still think its weird that I got so deathly sick when I did both shots together.  I wonder how I would have done if I had done them separately.  This year I just got the Flu shot, and had no symptoms at all.  They did say this vaccine this year for the flu was not as potent as last years.

Hope your doing good with your PE, and starting to feel better.  Your Damned If You Do and Damned if You Don't.

You do not know what to do with any of these things anymore

[Susan61]

Hi:  They keep changing the protocol.  IT was every 7 years or 6 years, but now after a certain age its supposed to be just once. I thought it was after 65 you did not have to get it anymore.  I was 62 when I got my last one, and I will be going on 65 this coming year when they give out the shots again.  I think I am done getting them now.

These things can drive you nuts.  Maybe somebody has the exact information to post.

[susantheresa]

Hi Billie,

Yes I believe the pneumonia shot is a one time deal.  I asked the nurse this year were they combined and she said no, but she did ask if I had one before.  Told her yes and she said that I was good to go for several more years.  I am 55.  Also, in my earlier post, I was only shareing that I was re-innoculated post transplant.  I do know that most on this particular post are cml, and not  transplant post.  I was very careful during my gleevac time and questioned everything.  I stopped because I was makeing myself crazy. Now, I worry about falling down and breaking a hip.  I stopped riding my bike because I am petrified about my osteoporisis, a side effect of my treatment protocol.  Even going to the Dentist because of the classification of bone density drugs, I have to be careful.  Iam, but I try not to go to too many extremes. I try and just sit in gratitude everyday and I just try somedays easier than others to be gentle with myself.  Blessings.  Susan m

[chiocchi]

Hi all, 

The info I have on the pneumonia vax is one should be given every 5 years.criteria is if you are immuno compromised ,over 60(I think) asthma,diabetes,any chronic disease .we all with cml should get the pneumonia vax and definitely the flu vax every yr. the shingles vaccine is not a bad idea,it is expensive and I don't think insurances cover it. I work in a prison infirmary  and we do get inmates with shingles.i use precautions and so far so good! Haven't gotten the shingles vac yet but plan on it. I like to live dangerously at times! Crazy but true!

[hannibellemo]

Hi, all,

This is what I was told the new protocol was. If you get the shot at 60 or before you need to get it again at  65 . They no longer combine the shots because there was just to much adverse reaction. I can't even imagine getting the two together - I never have a reaction to the flu shot other than a sore arm. With the pneumonia vaccine I was ill with a low grade fever and an arm so sore I could hardly raise it an inch or two for three days. The idea I have to go through that again is depressing, to say the least. Better that than pneumonia, though!

Pat