[jhorner]

Frequent infections - any treatment options?

by jhorner on Fri May 16, 2014 5:15 pm

Hello,

I am a smoldering myeloma patient, diagnosed with MGUS in 2005, became smoldering in 2012, and I have had several infections in the last 2 years since the smoldering diagnosis. In fact, I was diagnosed with smoldering myeloma due to tests done to find a causative factor for the infections.

I have low IgM and IgA and my oncologist indicated that infection due to immunoparesis is often considered another criteria for active myeloma, but they don't treat it, so they leave it off the criteria list. He conveyed that the reason they don't treat it is because the treatment puts you at higher risk of infection.

I have had 5 infections (sinus; bladder; ear; kidney) in the last 6 months and it is to the point where I feel sick all the time and repeated cycles of antibiotics cannot be the only treatment option!

Does anyone else have this symptom with smoldering myeloma and, if so, what has your doctor suggested? Are there any treatment options for this symptom?

I realize that a stem cell transplant wouldn't be an option with a smoldering myeloma diagnosis and that is a treatment that poses serious risk of infection, but surely there has to be some standard treatment for this.

I appreciate all comments and insights!

JBH

[Maro]

Re: Frequent infections - any treatment options?

by Maro on Sat May 17, 2014 6:39 am

Hello

My mother was diagnosed with SMM last month. They prescribed ORACILLIN [penicillin V] 1.000.000 for 6 months. 1 tablet a day.

It is an antibiotic containing penicillin. The onco said it was a preventive for infections.

I don't know this can be done in the USA. We live in France.

Try submitting this idea to your onco and see what he thinks.

Wishing you well.

Maro

[Smittie]

Re: Frequent infections - any treatment options?

by Smittie on Thu May 29, 2014 8:10 pm

I too wonder about infections and building my immune system up. I recently had a stye in my eye; normally I would wait that out but decided to see my primary care physician about it. As a precaution, he put me on an antibiotic. He said I needed to call him even with a bad cold.

I am not comfortable taking antibiotics for everything. Anyone trying something else to build the immune system up?

[Carlie S]

Re: Frequent infections - any treatment options?

by Carlie S on Sat Jun 07, 2014 4:23 am

Hi,

I too get all manner of infections and especially sinus. I have had all the surgeries they can do, and antibiotics began to only get rid of infection for a couple of days! So I now get a monthly antibody infusion called Intragam P (human normal immunoglobulin 6%). This is administered very slowly intavenously -- takes about 2 hours. This has changed my life!

I do however know when I am due for my next dose as I begin to get sick again! I am in New Zealand, so unsure if it is available in your country?

Worth asking though.

[Dr. Heather Landau]

Re: Frequent infections - any treatment options?

by Dr. Heather Landau on Mon Jun 09, 2014 12:05 am

Indeed, recurrent infections due to immunoparesis can be considered active multiple myeloma and some physicians will treat the underlying disease in that setting. However, monthly infusions of immune globulin (IVIG) may be effective in the absence of therapy. It sounds like a trial of monthly IVIG would be reasonable.

[Nancy Shamanna]

Re: Frequent infections - any treatment options?

by Nancy Shamanna on Mon Jun 09, 2014 9:01 am

I also had recurrent infections in the years leading up to my diagnosis of myeloma. At the time I did not realize that these infections were related to having a blood cancer. I did catch every cold and flu that was going around, and it seemed to last longer with me than for others. My relief from all of that was being treated for myeloma

Since I went through a stem cell transplant, I took a lot of medications afterwards (antibiotic, anti-fungal, anti-viral) that would have masked whether or not I was getting infections just from having a low immune system. But now, I am really healthy, and don't get many infections. I also exercise a lot, which I think helps to build up the immune system. Also, have not been on any chemotherapy drugs since April 2011. The drugs themselves can lower one's neutrophil and other white blood cell counts, and thus make one susceptible to infections.

So in my case, being treated for myeloma led to better health.

[jhorner]

Re: Frequent infections - any treatment options?

by jhorner on Thu Jun 12, 2014 8:45 pm

Thank you Dr. Landau and others for your replies.

From what I have read, the tendency for viral infections such as colds and flus is most likely due to low blood counts, while the bacterial infections of the sinus, ears and urinary tract are likely to be from immunoparesis?

I seemingly only get bacterial infections. If I'm getting viral infections then they are not obvious, since I haven't had a cold or a stomach flu for many years.

I used to exercise regularly but it seems to be a catalyst now to infection instead of preventative. I'm seeing my oncologist in July and I'm going to request IVIG infusion based on comments here. Thank you again.

[tank20101955]

Re: Frequent infections - any treatment options?

by tank20101955 on Wed Jun 25, 2014 12:24 am

i don't know what your opinion of marijuana is but, i believe that it is responsible for my multiple myeloma staying in the smoldering stage for the last 2 1/2 years. i started using it again about 8 years ago when i came down with nephrogenic systemic fibrosis, which is a man made disease caused by having a mri/mra done using gadolinium contrast dye while in full renal shut down after having a experimental aortic aneurysm surgery. this disease causes severe pain and muscle spasms and can actually tear muscles and i know this for fact. but the reason i am telling you this is because ever since i have been using it, i haven't had a cold or the flue or infection in the last 4 to 5 years and it works miracles for muscle spasms thank god!. the way it works is your brain has CBD receptors built in and if your immune system is the gun to kill diseases, the CBD in marijuana is the ammo for the gun. it actually kills a lot of different types of cancer like leukemia and breast cancer, and it helps to boost the immune system at least it has for me. pop on the web and do a search for "run from the cure" the Rick Simpson story. and keep an open mind.
P.S. I haven't received any treatment for my multiple myeloma so i am pretty sure the cannabis works!. really hope this helps!. oops i forgot that i did get shingles about 2 months ago but it only lasted a week, and it was hell for that time but i am glad it didn't last any longer than that considering it can last for months. unfortunately i had it covering my neck and face on the right side from adams apple to the spinal cord area all the way up into my hair almost to the top of my head.

[jhorner]

Re: Frequent infections - any treatment options?

by jhorner on Wed Jul 02, 2014 3:28 pm

Hello Tank,

I read the documentary you referenced. Interesting concept. However, you indicated you are smoking marijuana in hopes of having the same effect as the hemp and while it does help with anxiety, depression and pain, it causes it own set of problems when inhaled. My best friend smoked daily and she died very quickly at the age of 49 of esophogeal cancer. I know a lot of smokers that get cancer. If you are doing this in hopes of keeping your disease stable, may I suggest an herb vaporizer?

I may try the hemp oil. Keep in touch.

Best,
jhorner

[ldahle1]

Re: Frequent infections - any treatment options?

by ldahle1 on Sun Jul 06, 2014 12:00 am

I was just about to start a new topic when I stumbled on your post. Don't know if this qualifies as an infection or not. Just went to a very well informed Doc in a box for what I thought was a UTI. Turns out its interstitial cystitis. Very painful and drains your energy. Could it be linked to smoldering myeloma? Anyone out there had the same complaint?