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czaringMember
Wow Alexa!
I just wanted you to know that I care. I don’t have not much to offer you as I am just learning about all of this stuff too. I just don’t want you to feel alone. Even if there will be no solutions here – there will be concern and caring.
czaringMemberGood luck to you, Doreen. Jimbob’s post and your response to it touched my heart tonight.
czaringMemberMarsha – I just came to these boards about the time of your BMT – so we’re new to eachother. But I’m sure happy for the way your story is going.
Cindy
czaringMemberNo first-hand experience here … but have read a lot on the site here that the fever is common – though don’t know for certain about a day after …. I’m pretty sure I’ve read that as well.
Haven’t read and don’t know about the “little red” … agree that it sounds like a question for the doc.czaringMemberMaybe we can catch a few of the newer members by bumping this up to the top again.
czaringMemberI don’t pretend to know what is best if not Vidaza – but I DO know about allergic reactions to meds.
It’s such a bummer when allergies complicate things the way they can. I had to have two surgeries back to back a couple of years ago – my reactions to the meds I was given were bad after the first surgery, but HORRIBLE after the 2nd – severe swelling, hives, new rashes erupting 2 weeks after discharge. They discharged me early as I was reacting to the plastic tubing around the nose and mouth, the tape, the sheets, the stockings – even the bright orange, plastic bracelet marked “ALLERGY”!! Blisters everywhere! All of this triggered by either the pain meds or the antibiotic they had given me.
Once the body gets into that “heightened allergic state” … it can start to react to EVERYTHING. I went on to have anaphylaxis on about a dozen occassions after that – over the stretch of several months and could never determine the cause/causes. Scary! Benedryl was a constant companion (also an epi-pen). I even got so that it didn’t knock me out! THAT’S a little concerning.
After beginning a daily dose of Allegra (180 mg) – my body has calmed down to the point where I have had no anaphylaxis for nearly a year now. No Benedryl for nearly a year. I have even taken one of the pain killers/anti-inflammatory that I reacted so badly to before – with no reaction this time.
I doubt that a Dr. would consider this a solution in your Dad’s case – but I find it interesting that the body’s allergic response to something can be controlled/maintained in that way. Also – don’t be surprised if your dad has allergic reactions to other stuff for a while until his body calms down from this response.
czaringMemberThanks Andrea. We’re both allergy prone – my mom & I. Both have had pretty severe reactions to meds at other times in our lives. That’s a thought … although she said these were like teeny tiny pustules …. red with a little milky fluid in the center …. small … but now all over her face. My experience with our allergic reactions is that the bumps have clear fluid – like a blister – and often itchy or stingy. These don’t hurt, she says. I’m still interested to learn what you learn … or any other skin issues that have arisen for folks … either because of this disorder or the treatment of it … who knows which is what.
Thanks for the response. It’s a minor issue, I know. I was just curious.
czaringMemberThanks – I’m pretty sure that it is a mild infection. Far as I know – her WBC is fine – so don’t know if it can be part of her syndrome or not. I’m sure she’ll point it out to the nurse on her upcoming appt on Thursday. We’ll see what they think.
czaringMemberHey Alexa!! See??? I’ve seen you post to another young patient here … already finding a piece of the positive and sharing it with somebody else. That’s the good stuff – right there! That comes from your inner-strength and your ability to turn around from your low points and move back in a positive direction. Good for you! That takes a great deal. And you’ll find the way to do it when you need to. I hope you are feeling better than on January 6. You sound as if you may be.
czaringMemberSarah …. P.S. ….
Until you hear from Neal or one of the other more experienced members … look at the list of Centers of Excellence here at the site. Knowing where you can go for the best possible care and protocols will be mentioned to you as important. That – and finding a doctor who HAS seen as much of this stuff as possible. There are not all that many of them – relatively speaking. Look over that list for the possibilities while you’re waiting for the other advise that is sure to come from the others at this site.Cindy Z
czaringMemberWelcome Sarah. You may notice that a number of us have gone into our profile (see button above) and altered the signature area to include an abbreviated summary of who we are and why we’re here …. much as you did in the first paragraph of your posting. (In my case – it is my mother who was recently diagnosed with this – as I’ve indicated) That seems helpful and if you stick with these boards for a while – you’ll begin to understand why. As this forum seems to operate – you will be hearing from the ones who have volunteered to be the resident experts here. They know a lot and they’ve been dealing with this stuff for a while …. those that know much more than I do. I’m just learning too – but I DO know that your young and tender age will really work to your advantage. I know that you will feel as if you’ve found the right place when you stumbled across this board and registered yourself!!
czaringMemberCarrie – from what I’ve read here the fever is common but can be controlled or reduced some by adminstering Tylenol and Benedryl at or just before the Tx. Hopefully he doesn’t need one again – or often – but if he does … make sure they’re taking that small precaution.
czaringMemberHi Vance – I’m new to these boards since you were here last. As I always do – I did a search for your Author name and went back to follow the history of your postings. I’m glad to hear your wife is doing well now. Did you see the posting yesterday about a fungal infection? If I remember correctly … the location is the lung … maybe you have some info to share all the same. Once again ….. it’s always nice to hear of things that are going well. Welcome back.
czaringMemberAlexa – I don’t have this stuff – my mom does. So I don’t know what it feels like to be in your shoes … at least not quite. What my 46 years have taught me though – and it is ONLY MY OPINION – is that the WHOLE POINT of life and living is to LOVE …. and to find your way through those events (and we all have them – to one degree or another – for one reason or another) where you find yourself asking those questions “why me” or “what did I do to deserve this”. It’s hard .. but if you can learn to think that asking and facing and working through those questions is really the magic of being given life. Everybody finds different answers in different ways. But those who find their way to the positive answers … even in the face of terrible circumstances …. the POSITIVE way to look at it … the POSITIVE way to deal with it …. the way to give to others what you have learned in your own life. It’s important to ask yourself what you may have done to deserve this … that’s part of figuring yourself out … but my guess is the answer really is “ABSOLUTELY NOTHING”!! My guess is you are really a good person who has done the best they can with what they have. That’s all any of us can do. Know that you’re not really alone – ever. And try to smile again!! That alone will make you feel better … even if you have to force it at first.
czaringMemberBrian …. Neil has good info on this (and EVERY) topic. I’ve seen him recommend irradiated/filtered blood – called I/F or F/I (help here, Neil) and I have come to understand why that is important. Tylenol/Benadryl also reduces the body’s response to the “foreign stuff” that it perceives and can be given prior to the Tx (transfusion). Also – the iron thing – from what I’ve come to understand – takes quite a while before the build up becomes threatening to the body. I’m just reapeating some of what I’ve read here. Also seems as if the other issues … blast @ 14% and low WBC/neuts can be addressed. But that starts to cross some quality of life issues – as others have mentioned – it can involve chemotherapy which can be as hard on the body as some forms of this syndrome.
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