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mcl shingles question

ceili
Posts: 15
Joined: Jan 2017

My mother who has mantle cell with so far no treatment(watch and wait) has been suffering with a bad case of shingles since the first part of April. She was at the doctor today and they prescribed her another round of anti-biotics but the are also sending her for a bone scan which I dont understand. My question is could there be a corelation between the shingles and her lymphoma spreading? A foot note she also had a breast removed a few years ago due to breast cancer..

ShadyGuy's picture
ShadyGuy
Posts: 390
Joined: Jan 2017

To my knowledge, antibiotics do not positively affect shingles. They could be used to prevent/treat a secondary bacterial infection. My Mom had shingles before she died. Nasty stuff. Good luck. Ask about vaccines and prednosolone.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Ceili,

I'm sorry to learn your mother has MCL, my father had it.  I have follicular NHL and last summer I had two rounds of shingles.  At the time my best friend was my Oncologist.  With in minutes of discovering the nasty patch of blisters on my back, my daughter took a picture and I sent it to my ONC.  He asked me if I had anymore antibiotics  left in the house (I had to stopped taking them due to lowering my white blood counts) I did.  I immediately took them and it stopped it in its track.  The next morning I went into the office where it was confirmed and had to go back on antibiotics for a limited time (dermatologist put me on valtrex) .  It wasn't long but I can tell you.  Antibiotics helped with the PAIN and DURATION.  It is miserable and terribly painful.  I remember getting  Lightning Bolts of pain shooting down my right side.  I am not a doctor but both times I had it they helped me directly with the pain and I didn't have it for months but weeks.  As for any correlation I don't know, sorry.  Perhaps the doctor wants to see if there is any movement with the MCL to determine treatment or not.  As for the vaccine, I think once you have shingles you have to wait a year or more before you can take the vaccine.

 

Best of luck.

Evarista
Posts: 256
Joined: May 2017

Shingles is generally treated with either of these, plus a Prednisone taper.  Unless contra-indicated by other factors with your mother's condition, of course.  You may want to inquire if that what the doctor means by "antibiotics". A reduced immune system could contribute to the outbreak...With my lymphoma, I will be on preventive acyclovir for 6 months to a year.  But MCL is different, so not suggesting that that should be the plan for her.

ShadyGuy's picture
ShadyGuy
Posts: 390
Joined: Jan 2017

When I had shingles about 7 years ago I was treated with prednisolone taper, not prednisone. It was on my belly under my waistband. It went away almost immediately. Might want to ask which is best. My Mom had prednisone and it took hers a month to start clearing up. Each case is different but my Dr told me that antibiotics generally don't help. That is why shingles cannot be cured, only put into remission. I later got the shingles vaccine and no sign of it since. I hope I spelled it correctly.

ShadyGuy's picture
ShadyGuy
Posts: 390
Joined: Jan 2017

By definition, antibiotics are designed to treat bacteria and some single cell parasites - for example spirochetes. Shingles is causd by the herpes virus. Antiviral drugs like Valtrex are not antibiotics. Unlike antibiotics which kill the bacteria, most antiviral drugs do not kill viruses but work by interfering with viral replication.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

ceili,

Shingles occurence is very common for Lymphoma patients for some reason.  As Shady noted, it is a viral infection, and as such, has no known relationship to Lymphoma spreading, going into remission, or any other change.  So no: the shingles is not indicative of what your mom's Lymphoma is up to.

My brother has never had cancer (most shingles patients have never had cancer) but developed shingles about a year ago, and it took about a month for the inflammed area to heal. He still has bad pain now, and his doctors said the pain can persist in some patients a very long time, sometimes forever.

The bone scan could be for a variety of reasons. The easiest way to learn what it was for is to  ask -- I am in no way being sarcastic in this tough time for you and her.  But she has a right to know, and most likely wants you informed as well.   Just ask the doc the purpose: he or she will tell you.  People always have a right to know what their medical team is doing to and for them. 

But based on her probable age range and BCa history, he may be either checking bone density (BCa treatments can induce menopause if she was not already menopausal, and that will affect bone density), or he could be checking for tumors:  a way to avoid the pain of a bone marrow biopsy if all is clear.  Or he may be checking both, or something completely different.  

Clinically, the ordinary way to look for bone marrow involvement in Lymphoma patients is of course is via a bone marrow biopsy, but many cancers are not checked for bone marrow involvement primarily via a biopsy, but rather via a bone scan.  Prostate cancer is one such, and breast may be another.  I have read the accounts of dozens of men at my other board (Prostate) who are routinely checked for bone marrow tumors via scans, not biopsies.  In fact, I can't recall any of them ever even mentioning a marrow biopsy. 

Know that it is extremely important to have formal, legal access to her records, if she is willing.  It can be a nightmare in years furture if you do not.  I had power of attornery for my mom through her years of dementia, and was executor of her estate after her death, and my father's ten years before. These legal matters are a critical part of caring for someone.

max

 

Evarista
Posts: 256
Joined: May 2017

Pretty much the same thing from a patient standpoint:  Prednisone is activated by enzymes in the liver to turn into prednisolone. Apparently they do have similar uses but prednisolone is more readily absorbed by the body and is used when there is liver toxicity or liver failure involved.

ShadyGuy's picture
ShadyGuy
Posts: 390
Joined: Jan 2017

With prednisolone you know it is being delivered in the proper form and at the proper dose, no conversion required.

ceili
Posts: 15
Joined: Jan 2017

I appreciate all the info given. Just hoping for some relief soon. I have searched on the internet and found places that states shingles can cause serious complications for people with Lymphoma, of course if you look hard enough you can find anything on the web... I have never seen my mother this debiltated.
Thanks again to all that replied.

Bill_NC's picture
Bill_NC
Posts: 128
Joined: Jan 2013

Hi All, checking all posts above it kinda got me worried. I have been treated from NLPHL in 2013. and my ONC last year recommend I get the Shingles vaccine but was not approved for it because I was under 50. this year I turned 50 and my physician, not ONC rewrites the prescription to get the vaccine and I got it a week ago. 

Today decided to check about the vaccine side effects as I been getting weather allergies I did not have before, to find out that the CDC does not recommend getting the vaccine if I have lymphoma. I kinda regret not checking the net or doing more research before taking the vaccine, and how come my DR's do not mention this to me and they are aware of my lymphoma. Not sure if I made the right decision. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I have NHL, DX in 2014 treated and fine today.  Last summer I had TWO rounds of shingles.  Very rare and miserable to say te least.  I was on the other side of the fence and asked why I wasn't offered the vaccine.  I just turned 50 and my ONC said I have to be shingles free for a certain period of time before I can consider it.  No side effects were mentioned nor did I ask.  

I was just reading in the Times, a new study came out that if you have had shingles you have a 60% increase of heart attack and possible stroke.

 

Darned if we do, darned if we don't.  I really hope it's not related and all will be well soon.  

 

Evarista
Posts: 256
Joined: May 2017

My guess is that the CDC recommendation is related to the vaccine being an "attentuated live virus vaccine".  As with other "live" vaccines, there is some risk to immunocompromised individuals of actually acquiring the condition associated with the vaccine.  I have not heard this with the Zoster vaccine, but it has definitely come up with the measles one.  Interestingly, there was a period in the U.S. when more people got polio from exposure to recently vaccinated kids than from the "wild" form of the disease (note: polio vaccine is no longer "live").  If you can remember back to your first treatment phase, you may recall that you were advised to avoid small children?  The live virus vaccine issue is part of the reason why.

So the question now is:  What is the status of your immune system?  This is a discussion to have with your ONC, of course.  Since the s/he was the one who recommended it last year, chances are s/he is fine with your having it now.  But just in case there is an argument for prophylatic acycovir, you should let him/her know.  Good luck and I really hope nothing transpires.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Bill-NC,

Getting the vaccine was an excellent move.   LOTS of former Lymphoma patients get shingles, which is horrible.  The benefits outweigh the risks.  My oncologist, a man with 5 Board Certifications, told me "absolutely get the vaccine - you would be stupid not to."  Of course, he also told me once,  "Your immune system is the same thing as your WBC; if your WBC is normal, your immune system is normal also.  Don't believe that because you had Lymphoma that you are now some frail, sickly little man."   He was Ivy educated (all of his schools), and his Boards include Hematology, Medical Oncology,  Internal Medicine, and two other fields.  It is intersting to note that since recovering from advanced Stage III HL 7 years ago, I have not had a cold or the flu, even once.  I do get an annual flu shot, and recommend such to everyone.

You could find a study that claims breathing oxygen is harmful, if you looked long enough.  There is a pinhead somewere to argue agains everything on earth, regardless of what it is.....  George Carlin had a famous line:  "Scientists have discovered that salavia causes stomach cancer, but only when swallowed in small amounts, over many decades."

Real life: Testosterone has a role in prostate cancer (which I have had), and estrogen has a role in breast cancer.  What are people to do ?  Live your life in peace !  Getting the vaccine was a good thing....you were a "worry wart" back during your treatment, I recall so well.  

It is great to see you write again, my good friend,

max

Bill_NC's picture
Bill_NC
Posts: 128
Joined: Jan 2013

Thanks Max, Evarista and OO7. your input is really put my mind at ease and don't feel bad about it anymore. Also yesterday I talked to my pharmacist at the local pharmacy store who gave me the shot and who had a breast cancer. She said that she got her vaccine after 6 months of completing her chemo therapy as her oncologist recommended it in 3-6 months after immune compromise (chemo, Radiation) treatment. I am also up to date on my flu shot every year and did not get sick since 2013 (Thank GOD). 

Max, you knew me to be very worry and to be honest, I never thought I'll be around in 2017 posting. I'll say it with pride "Max you were and still, my inspiration. Thank you".

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Bill,

I tend more toward the analytical-rational here, but (I am a bit embarrased to say) your comment made me cry.

I had not cried here in years, the last time was when Dixiegirl died.

Bless you, my brother in wellness,

max

lindary's picture
lindary
Posts: 642
Joined: Mar 2015

About a month after Ifinished the R-Chop my husband got shingles. His Dr was more worried about me than him. I was fine. The odd thng is that my husband had gotten the shingles vaccine, I did not because of the lyphoma diagnosis. I need to ask my dr if I should get the shingles shot when I get my flu shot this year. 

Yes you can get shingles even if you got the vaccine but the infection is supposed to be less than what you would have gotten if you did not get the shot. 

ceili
Posts: 15
Joined: Jan 2017

My mother is still suffering with the symptoms of the shingles since early April. The pain in her foot and leg is severe. The rash finally seems to be going away. Just thought I would give an update after reading the new comments. I was wondering if 007 could give a little detail on her issues with her shingles if she reads this.
Thanks

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Ceili,

I fear I will be of little help but I will share my details the best I can recall.  Last summer I was talking with my best friend who is a pediatric oncologist and I was goofing around when I told her I thought bugs laid eggs  underneath my skin.  I felt under attack, I was itching and thought it was just insect bites as a result of gardening.  My daughter took a picture with phone and I sent it to her.  Immediately she knew what it was and told me to tell her husband (my Oncologist).  He called me within minutes and asked if I had any famciclovir left (I had to stop taking them due Low drop in my white blood counts).

I took an antibiotic then antiviral.  Immediately.  I met him first thing in the morning where he  prescribed more famciclovir or possibly acyclovir.  Then sent me to my demotologist who put me on valtrex.  I was on the antiviral for a few days before I switched to the valtrex.  I had to stop after a day or two because I had a horrible reaction which I thought I was heading for the hospital.  It was Horrible.

Finally I can tell you I never touched or scratched it.   I had a very small rash on my left side traveling along the dermatome. Whatever combination that I took between the antibiotic, the antivirals or it was just me but it stopped in its tracks. It did last for several weeks and the pain was immense at times but after a month or so it was nit painful and rash was going away.  

 

A few few months later it came back.   This time I took a low-dose of antiviral (possibly acyclovir) and it wasn't as bad.  It did surprise both of my doctors but so did the fact that my shingles infection wasn't nearly as bad as it could've been.   I feel bad for your mother I remember the pain like it was yesterday, it was horrible I do hope she gets relief soon and she find something that works for her.   I feel blessed that I was able to treat it right away literally within minutes minutes of finding it.  Because of where it was located on my back I couldn't reach it so therefore I couldn't scratch it and perhaps that's why it did not travel ???

 

I don't know but I was lucky.

Good Luck

 

ceili
Posts: 15
Joined: Jan 2017

Thank you 007,

Izzy Bop's picture
Izzy Bop
Posts: 2
Joined: Jul 2017

I too have had horrible shingles since before my diagnosis. The shingles outbreak (along with a whole laundry list of symptoms) is what led me to beleive I had Hodgkin's lymphoma. My oncologist put me on Valtrex twice a day for a month and then tapered me off to 1 a day to prevent return. I am still in the middle of chemo so my blood work is done every other week. I have horrible scars now and am treating with vitamin E oil at night and cocoa butter during the day. At least the my shingles are in "remission". I have the greatest team of doctors. I have their cell phone numbers and text or call whenever anything important comes up. I don't abuse the privilage of having their numbers so they are very quick to respond.

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