“Dr. Elias Anaissie of the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences presented these guidelines at the International Myeloma Workshop (IMW) in Paris last month.” Excerpt from The Myeloma Beacon (click link for article)
Dr. Anaissie is a highly respected infectious disease specialist who works in concert with MIRT at UAMS. This article, for me anyway, turns the whole subject right on it’s head. (Remember they are “practicing” medicine!)
I will tell you that in our association with UAMS we have never been told, nor received any vaccinations before, during, or after Dave’s treatment there. I on the other hand, as the caregiver was implored to get the Flu Vaccine. I don’t subscribe to this sort of thing and had never gotten a flu shot. I was emotionally distressed briefly, but smiled and told Dave “you owe me one buddy – BIG TIME!” Off I went to their clinic to receive my first ever flu shot in 2008 for a whopping 10 bucks. I didn’t have any adverse reaction from it, just a bit of a sore arm for a few days. The following year they started in on me again and this time wanting me to also get the H1N1. I balked. It seemed every time I actually did make an attempt at home locally, they were out of them or my insurance wouldn’t cover it at WalMart but would at Walgreens. So while I tried about 5x to get it without any luck, I decided it was a “sign” that I really didn’t want to get it, so I didn’t.
Dr. Anaissie also prescribes prophylactic Tamiflu. Our at home doctor was very against this and CDC does not ever recommend it. Dave was fine when he was going through treatment to do this, but as time went on he refused again and again to take the Tamiflu daily. We settled on taking it at the first sign of illness, but of course it’s not designed for that, so that has fallen by the wayside as well. Some view Dave’s choice (and mine) as very dangerous. We simply keep in vigorously, all the preventative, non-invasive measures, primarily a lot of hand washing, careful restaurant and eating choices and we have been just fine. But I’m not endorsing your choice or decision in this matter one way or the other. I simply supported my husband’s decision after thoughtful discussions.
I remember in the early days when Dave would get the sniffles we would both try to squelch an overwhelming panic. Over time, we became more comfortable, as Dave responded to OTC and alternative remedies without much fanfare and had a normal course of recovery. It was always a great relief and gave us confidence (rightly or wrongly) that he had some immune system for fighting various things.
So this new article about vaccinations butts right up AGAINST the “line” we were given in Arkansas about this topic in the past. We were actually told that his vaccination protections would return. Given everything else about SCT being so over our heads, we accepted this explanation, as implausible as it may have sounded then and even now.
It will be interesting to see when we go back next if they are enacting his recommendations at the MIRT clinic. I will have all the normal concerns I have regarding the over-vaccination of our nation’s children and will be very selective, in consultation with our Doctors and Dave, on which ones I’m comfortable with and which ones I am not. There is NO WAY I’m going to agree to ALL the vaccines listed in this article. NO WAY.
It is an intriguing turn around on this subject. I’m curious if any of you have had a different experience or explanation on this subject. What your take is.
As always I’m thankful to The Beacon for publishing these interesting and valuable updates on Multiple Myeloma and to Dr. Anaissie for his years of tireless service to those of us with MM. He is a true gem in Arkansas.
Oh My Gost Chris! What a mess. Thank you for sharing and I hope he gets stable again soon.
hello to evryone, my husband has MMyeloma and has so for the ast 8 yrs.His is a very sensitive one and responds very well to treatment,BUT 3 yrs ago for the 1st time he went to the local doctor without me…The doc said with your condition you should have the flu needle,(HE HAS NEVER HAD THE FLU IN THE 33 YRS IVE KNOWN HIM EVEN WITH THE MYELOMA).so within 2 days he had the Herpes Virus..well that cleared up within1 wk but it ran his platelets down from 350 to 78 and we have been battling to get them back to decent levels ever since, he takes some alternatives to help ……so hope this helps anyone out there…regards chris
Oh thank goodness there is someone else out there like me! I do my thing as well Sandy. I’m preventative, intuitive, alternative and then keep away from me should I be sick. I had one cold last year, which was even unusual for me and Dave would jokingly make a cross for me to keep away from him and so I would try to get the couch first! haha
As a caregiver, I am cautious about exposing my relative to any unseen and dangerous threats, but I have refused the various flu shots for a number of years after having one that essentially GAVE me a horrible case of it. So far I have avoided all symptoms of flu for many years. Instead I have chosen to keep OSCILLO on hand, a French Biobore immune booster, and I take it when symptoms of illness rear their ugly head.
Very interesting post, Lori…. thanks for providing it.
That’s a good point Doug. I find in Ark they don’t tell us EVERYTHING as it is just too much to absorb, unless we ask specifically or are curious then they are very willing. Also this was an article and not the actual presentation paper, so there may be more info we’re missing. But the article talked about vaccines before and I don’t recall Dave getting any. But then again with all that they do I may have missed that entirely! 🙂 I just remember the tamiflu as it was a divergence from what they wanted Dave to engage in long term.
I was told in Jan that by my next visit in Aug, I should be able to get the pneumo vax, tet, and the other basic vax. Tricot waits until the CD3+ and CD4+ count is over 500. For aggressive treatments like Dave and I went through, that can take years. Or, it can come in a matter of months. He told me the average is 12 month….I’m beyond 36 months. I know a patient from the Huntsman who was admitted to the hospital in HI and they wanted to give her the pneumo vax. However, Tricot said no…so I think anyway. As you know, Tricot comes from the same school of thought as Barlogie for the most part. Tricot also told me all of the Hep vaccines I’ve had as a first responder are still good…go figure that one out. I was also on Tamiflu and also received the flu shots during my treatment period.
Great discussion Lori….thank you
Excellent Karen! Searching for this sort of stuff is not easy to be sure.
hi lori,
yes, i will do all i can to provide feedback from hugh’s mtg. on the 5th. one very positive thing – i did confirm that hugh’s specialist is a member of the International Myeloma Working Group, which put forth the guidelines. but i had a devil of a time finding that out even though i googled a query for a list of names! finally found it, 145 members, by typing in the MD’s name, then IMWG! that query took me to a “Blood” journal article printed in march, 2011 that gave the full list, prior to an article (not related to the re-vac guidelines). i hope that helps someone who may be wondering if their specialist participated, thus is thoroughly prepared to address pt’s questions about this very complex issue. i might also suggest that prior to a dr’s. visit to discuss it, it might be a good idea to fax a copy of the article you posted, for review by the doc ahead of time. once again, thank you for giving us the heads -up. warm hugs, karen
Interesting Sarah. I think that what is intriguing about Dr. Anaissie’s presentation is some of the vaccines BEFORE transplant and even collection. Sigh… more to know and more to keep up with. I guess I will just take the viewpoint that they are continuing to “tweak” the process, but there are no data numbers in this article. I’ll hope for a full paper on it in the near future and wonder if he will be besieged when we get to Ark next.
Lori: When we went to Dallas for the Aphresis, during the consultations we were told that Bob would have to have ALL his vaccinations redone, sometime after the SCT.
Since he hasn’t had the SCT, it hasn’t mattered …… but one day, it might. So, I’ll continue to read what’s out there so we can make an informed decision.
Thanks for helping to provide info…..appreciate you!!
Thank you for that informative response Karen. You know my doc friend Marilyn was always perplexed as to why they weren’t giving dave the pneumo vax. She just couldn’t believe it and I just kept saying, “they say no.” Anyway, if you wouldn’t mind keeping us posted on this as you move through your follow up appointment with your doc. I would suggest you bring a print out of the article with you! And tell your physician that Dr. Anaissie is quite approachable from all I have heard. Keep us posted.
And I agree, it was hard for me to imagine the protection from childhood vaccinations would magically reappear after rising from the ashes! haha But hey, I’m not the MD right? I’m so gullible. 🙂
hello lori,
oh, my goodness!!! this is so timely, as hugh has his 3 month post ASCT (2nd in tandem) appt. with his myeloma doc on july 5th and we’ve been making a list of questions, concerns – and a re-vac schedule is right up there near the top.
i read the full guideline article (t/y for the link!) and i must say, it left me with my eyes crossed, and many more questions than answers. and remember? i’m a nurse! no help – no help at all.
we were also told that the pneumo vax hugh recieved in the first week he was dx’d, a requirement at mt. sinai at discharge, and a full 6 mos. before he was able to start tx (2 extensive sugeries to re-build his broken femur precluded ANY tx interventions – oy vey) would still protect him. it is hard to fathom just how having 2 ASCTs with massive doses of melphalan to wipe out one’s immune system, could leave that protection in place.
as for yours and dave’s experience, and being this far along in the journey, your common sense approach seems to have gotten you through just fine. and for that, i feel you are very fortunate. my concern is for pts. just starting tx, or maintenance therapy and all the complicating and overwhelming info to be sorted through. hopefully, your post will be a catalyst to emphasize that EVERY case of MM is different; and even more important, as you have stressed in many posts – ALL MM PTS. SHOULD SEEK OUT TREATMENT FOR MM IN AN MM SPECIALISTS/RESEARCH SETTING.