Hello everyone. I have difficulty understanding how a blood count can be normal and at the same time the immune system down (suppressed).
15 months after my SCT, I got herpes zoster, otherwise known as shingles. I had just gotten my blood test results, WBC 4000, HGB 12.20 and everything else in the norm, or almost. Before being struck by herpes (and struck is the right word, this is the third week and the pain is still considerable), I felt perfectly fine. My myeloma is in remission and I have not caught any infection or virus in over a year.
My hematologist said that he is not surprised, I am certainly not the only patient with myeloma who gets herpes, on the contrary! That is because after the transplant one will never be the same as before. I believe he even threw in the words “lymphatic system” which I could not in any way relate to the rest. But this happens all the time. I gave up understanding the doctors’ way of reasoning, I politely nod trying to have an intelligent expression while listening to their explanations and understanding next to nothing, and I finally give them my broadest smile and leave their studio thinking that they know better.
Now my question is: Am I likely to get a million more horrible infections and diseases? Should I keep a mile distance from the rest of humanity? ( I am joking, of course). The herpes has made me feel more vulnerable just when I had reached a relative serenity and peace of mind.
And finally: will the herpes have any consequence on the disease? Does a weak immune system make it more dangerous in terms of relapse, or not necessarily?
I hope someone will be so kind as to answer my questions. Ciao ciao for now!
Forums
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Blood counts good, but immune system suppressed?
Hi Annamaria, Is there a program in Italy (I think you are in Italy?) for getting one's childhood vaccines back after an ASCT? Although there is no guarantee that one has the strength of immunity to respond to vaccines, they are still available to post-transplant patients here in Canada. This includes all sorts of transplant patients, including kidney, liver, etc.
I did take acylclovir for about two years before I could get my chickenpox vaccine. Although the shingles vaccine is not recommended for myeloma patients, the chicken pox vaccine is hoped to have similar protection against shingles. Fortunately, I have not had shingles, although many people I know have had it , and they were not cancer patients!
The other vaccinations I had as well as the childhood vaccines were the annual flu shot, and also the pneumonia vaccine.
I try to be careful not to be exposed to infectious diseases, but of course that is not always possible, and I am glad I had the vaccinations. Measles, for example, is making a comeback, since many parents are 'anti-vaccine' and getting one's children vaccinated is not always the norm anymore.
Hope that helps!
I did take acylclovir for about two years before I could get my chickenpox vaccine. Although the shingles vaccine is not recommended for myeloma patients, the chicken pox vaccine is hoped to have similar protection against shingles. Fortunately, I have not had shingles, although many people I know have had it , and they were not cancer patients!
The other vaccinations I had as well as the childhood vaccines were the annual flu shot, and also the pneumonia vaccine.
I try to be careful not to be exposed to infectious diseases, but of course that is not always possible, and I am glad I had the vaccinations. Measles, for example, is making a comeback, since many parents are 'anti-vaccine' and getting one's children vaccinated is not always the norm anymore.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Blood counts good, but immune system suppressed?
I was given acylclovir from my diagnosis through all my treatments and until I was back to the new normal. I have also heard that, while the old childhood diseases are much rarer, multiple myeloma patients need to be vigilant, especially around children. My kids always let me know when one of them or the grandkids appears to be coming down with something so I don't drop in.
I've had immunity problems for many years before multiple myeloma because of CLL, and I have become very guarded. From using an alcohol-based hand sanitizer anytime I have come in contact with the public, to going out of my way to avoid anyone who may be suspect.
You just need to be cautious.
I've had immunity problems for many years before multiple myeloma because of CLL, and I have become very guarded. From using an alcohol-based hand sanitizer anytime I have come in contact with the public, to going out of my way to avoid anyone who may be suspect.
You just need to be cautious.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Blood counts good, but immune system suppressed?
Hello Annamaria,
Great question !
The immune system is much more complicated than simple blood counts. When hematologist / oncologists refer to the immune system, one of the easiest things to measure is the white blood cell count (WBC). It turns out that the WBC really refers to many different types of white blood cells. I usually explain to patients that white blood cells are really a "family" of different cells that work together to prevent infection (and cancer). The number and function of these WBCs can be abnormal for years after an autologous stem cell transplant.
In addition even if the total WBC count is normal, some of the different cells that make up the "family" of white cells in your body may still be low or not be functioning normally. In general we think that the immune system returns back to normal or near normal one year after an autologous stem cell transplant. Patients are still at some risk for infections however.
I am sure that you got (or are getting) re-vaccinated after your transplant.
There is no need for you to avoid other people, crowds etc. I would certainly use extra common sense and avoid sick people etc. I do not think that the herpes zoster will affect your myeloma adversely.
Thank you for sharing this interesting question with the Myeloma Beacon and its readers !
Great question !
The immune system is much more complicated than simple blood counts. When hematologist / oncologists refer to the immune system, one of the easiest things to measure is the white blood cell count (WBC). It turns out that the WBC really refers to many different types of white blood cells. I usually explain to patients that white blood cells are really a "family" of different cells that work together to prevent infection (and cancer). The number and function of these WBCs can be abnormal for years after an autologous stem cell transplant.
In addition even if the total WBC count is normal, some of the different cells that make up the "family" of white cells in your body may still be low or not be functioning normally. In general we think that the immune system returns back to normal or near normal one year after an autologous stem cell transplant. Patients are still at some risk for infections however.
I am sure that you got (or are getting) re-vaccinated after your transplant.
There is no need for you to avoid other people, crowds etc. I would certainly use extra common sense and avoid sick people etc. I do not think that the herpes zoster will affect your myeloma adversely.
Thank you for sharing this interesting question with the Myeloma Beacon and its readers !
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Blood counts good, but immune system suppressed?
Thank you Doctor Libby, Nancy and Wayne for your replies. While the treatments that I received are identical to yours (Velcade, thalidomide, Dex), as the protocol for treating myeloma is an international one, no one has talked to me about re- vaccination after the ASCT. I will certainly ask my doctor about it.
I took acyclovir as part of the induction (as well as Bactrim), but after ending all cures in May of last year and declining Revlimid as maintenance, I do not take any medicines.
Thank you again Doctor Libby both for the explanation and for reassuring me about possible consequences of herpes on the “main problem”.
I took acyclovir as part of the induction (as well as Bactrim), but after ending all cures in May of last year and declining Revlimid as maintenance, I do not take any medicines.
Thank you again Doctor Libby both for the explanation and for reassuring me about possible consequences of herpes on the “main problem”.
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
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