The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 330. Re: Dean's latest challenges...
    KyGuy Registered Users
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    Betsy,

     

    It's ok to sympathize with Dean without taking his meds you know.  I hope his fevers go away.  Wishing both of you health and strength....

     

    Take care,

    Kelly

  • 331. Re: Dean's latest challenges...
    pamd Registered Users
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    Betsy, a long shot, but couldn't be bedbugs (which are on the rise all over) could it? I only mention because of how it seems to be better during the day, then worse again at night. Don't know why Dean wouldn't have them, tho, too, so probably not it. I can truly sympathize, I believe itching is worse than pain, at least for me. The discomfort of it is a killer. Anyway, hope it goes away for you. And also that Dean loses the fever and pneumonia symptoms. I'm thinking of you both.

     

    Pam

  • 332. Re: Dean's latest challenges...
    bradnchris Registered Users
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    Betsy,

    Sorry you are dealing with this. I wonder if this could be a viral rash? I was thinking something like Fifths disease. I know you typically see this in children, but it can occur in adults. Usually it starts as distinct areas of red spots that start to coalesce and become sort of "lacy." It can show up a week or more after you have been exposed to someone who has the virus. The tricky thing is that the person who had the virus may not have had any signs or symptoms at the time you were exposed. Just a thought...Hope you feel better.

    chris

  • 333. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Thank you all so much for your encouragement and thoughts/suggestions.  The good news is my rash is getting better.  It still comes back at least once a day but is only on my arms & legs and is not near as bad as it was last week.  I did go to the allergy specialist last week and he said that with what I told him about when it first appeared (I ate spagetti with meatballs at Macaroni Grill) and the questions he asked (no new detergents, medications, perfume, etc.), it appears to be a food allergy.  Chris, my rash didn't look anything like Fifths Disease rash so I don't think that's what it is.  Pam, I don't think it's bedbugs because sometimes it appears before I go to bed and then is gone when I wake up and sometimes just the opposite.  And as you said - Dean would be itching too, and (knock on wood) right now he's not itching at all...Praise the Lord!!!  Carrie, I've washed everything (bed sheets, clothes, etc.) in ALL Free & Clear so I don't think it's contact dermitis.  The allergy specialist suggested that I avoid beef, tomatoes & wheat for now until they can do allergy testing which is scheduled for July 28.  It's been pretty easy to stay away from beef and tomatoes, but the wheat is a tough one.  He gave me a scrpt to atarax (which really knocked me for a loop!) and another antihistamine and gave me another prescription for prednisone if I need it.  I have to be off the antihistamines for 5-7 days before the testing so I'm hoping things don't get too bad.  I really don't want to take the prednisone unless I have to because it really gave me the jitters.  Since the rash would come & go within hours, I took pictures to show the doc and he said that it appears I was having a pretty severe reaction so he also gave me a script for an epi-pen.  I have to admit, it was pretty scary not knowing what is causing the reaction, especially when it was so bad and all over my body.  Hopefully the testing will give me some answers.

     

    As for Dean, he hasn't had any more fever except Monday of last week so that's good.  He still has a horrible cough (coughing up junk - mostly clear/white instead of green) and the coughs are pretty hard & persistent and are really wearing him down.  He stays exhausted, no energy, no appetite, and just wants to sleep even after sleeping during the night.  Since he doesn't have fever, it doesn't really warrant going to Houston.  I really feel that he should have blood work & be seen by a doctor so I called the local internal medicine doc and the soonest they could see him is end of August.  With a SCT patient like Dean, that was a bit irritating so we may look for another local doc.  I'm wanting them to check Dean's hemoglobin A1C because his blood sugar seems to be creeping back up to near 200.  As ya'll may recall, it flared up about a year or so ago and he was back on insulin, but after a few months it went back down to normal and he hasn't had to take any medication for the diabetes at all.  I'm hoping that might be the reason for his tiredness/sleepiness instead of something else going on.

     

    Well that's about it for now.  Thanks again to everyone for your support.....Betsy

  • 334. Re: Dean's latest challenges...
    pamd Registered Users
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    I'm glad you are having testing, Betsy---it's true that allergies can develop (or fade away) at any point in your life, and you can become allergic to things you never had a problem with before. Hope they nail down what's bothering you so you can avoid it. I almost can't imagine that with Dean's blood sugar being higher, and then with his lengthy history with cancer and complications (that included being on insulin at times) and the doc can't see him until the end of August? Crazy, Betsy...would calling his local onc and explaining what's going on get him in faster? Or maybe it's time for a new internist. After transplant, my BMT onc recommended an internist that basically only takes post-cancer patients. Very well-trained to handle GVH, etc. Well, I didn't have that as an issue, so when I saw her for typical internal med stuff (chronic sinus, which turned out to be a blockage, pneumonia, etc) I always got the distinct impression seeing me with my petty non-GVH related problems was a big waste of her time and expertise. So I dumped her, and got a regular internist (who still is in the same healthcare system as my onc and communicates with her) and I'm much happier.

     

    For Dean, waiting til the end of August seems way too long. Higher range blood sugars are hard on the kidneys, among other things, and Dean's body has already been through the ringer. Hope you can get him in sooner, with this doc or someone else. Keep us posted.

     

    Pam

  • 335. Re: Dean's latest challenges...
    Tex Registered Users
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    It seems anyone can order an A1C for Dean and look over a report without an appointment.  Although I'd bet it's not that high if he's just now creeping up.  It does average out 90 days.  What's his fasting glucose in the morning?

     

    Of course, it also depends on where a doc draws the line to define diabetes.  I've had a doc who was concerned when it approached 6.0, another who was fine with it under 6.4 and the kid endo I last saw was focused on 6.7.  I've kind of given up.  I've got enough crap to worry about.

     

    I sympathize with you on trying to stay away from wheat.  I've always been a bread eater and it first broke my heart and then drove me nuts when I had to give it up.  I did lose a little weight not eating all the carbs, which I was supposed to be avoidiung becausse of my "diabetes."  However, even though I'm pretty used to declining bread now, it's tough to avoid things at the grocery store and restaurants that don't have gluten in them.

     

    But it's over a year and I survived it.  I just hope I get to the point some day they stop taking away everything I enjoy.

     

    Ya'll hang in and let us know how you're both doing.

     

    Blessings

  • 336. Re: Dean's latest challenges...
    paralyzed Registered Users
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    Betsy

     

    Just wanted you to know I'm hoping these nagging things stay that way and are addressed so the two of you can get back to normalcy.

     

    Jim

  • 337. Re: Dean's latest challenges...
    KyGuy Registered Users
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    Betsy,

     

    I'm glad to hear your rashes are clearing.  When I was on the high doses of pred, it gave me the jitters as well.  It got better as they lowered the dose.  Yeah atarax can throw you for a loop.  Although I was happy to fight through the fog to get rid of the itching.

     

    I think I'd check with another doc for Dean's testing.  With his history, you don't want to mess around with anything.

     

    Take care,

    Kelly

  • 338. Re: Dean's latest challenges...
    bwarren25 Registered Users
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    Tex wrote:

     

    What's his fasting glucose in the morning?

     

    His fasting glucose reading has been between 180 & 200 so I'm sure it is even higher after he eats.  That's why I wanted the A1C done to get the average.  He'd be so tired recently that he'd drink more cokes & tea to try and wake up so I'm sure that made his blood sugar go even higher.  I called another internal medicine doc this morning and being a "new patient", the earliest appointment we could get was November....unbelievable!!!!  I decided to call Dean's original internal medicine doc back since they had mentioned he could see the PA instead, so he now has an appointment with the PA for Mon. at 1:30 p.m.  I figured that would probably be our best bet at this point rather than starting over.  Like you said, Tex, we really just need bloodwork anyway.  If something needs addressing then the PA can check with the doc if needed.

     

    Another possible cause of Dean's tiredness may be a side effect of the IV caspofungin.  Among many of the possible side effects, fatigue was one of the ones listed.  The caspofungin can affect your liver too so I'm glad he's having bloodwork.  Dean has had the extreme fatigue for a couple of months, some days worse than others, and probably the worst the past couple of weeks.  Against my better judgement, Dean even had me very reluctantly stop the IV caspofungin for the past 2 days to see if he felt any better and he actually did.  He promised me we'd start back today.  Right now he's scheduled to continue the IV med thru Aug. 29 for the fungal pneumonia so hopefully once he's off of it for good, the fatigue will improve quite a bit.  The fungal pneumonia seems to be responding to the caspofungin so I think he needs to keep taking it to hopefully get rid of the fungus completely.  I'm still glad he'll have bloodwork done because I think the elevated blood sugar doesn't need to be ignored.

     

    Thanks Pam, Kelly & Jim for your moral support as well.  I'm sure ya'll probably get tired of hearing about the endless problems Dean has endured so I appreciate the support you've all given us along this journey.  I'll update again next week after he sees the PA.  Thanks again.....Betsy

  • 339. Re: Dean's latest challenges...
    Tex Registered Users
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    Yowch!  When you wrote his glucose was approaching 200, I thought you meant after he ate.  That's kind of high for a fasting blood count.  I mean, it's high for 90 minutes after eating.  That does need to be looked at.

     

    I have some med-related fatigue with my standard SCT fatigue.  I can sympathize.  But don't forget the possibility that simply stopping the IV for a couple of days helped his outlook and made him feel better.  There might still be other reasons for his fatigue so stay vigilant.  I know you will anyway.

     

    It sounds like ya'll need some more docs down there in Cajun country.  November for a PCP is reidiculo-mundo.

     

    Blessings

  • 340. Re: Dean's latest challenges...
    pamd Registered Users
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    Glad you are getting him in sooner, Betsy. And I've had PAs who I trusted more than the doctor. Let us know what you find out.

     

    Pam

  • 341. Re: Dean's latest challenges...
    KyGuy Registered Users
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    I'm glad you're getting him in on Monday.  PA's and nurse practitioners are among medicine's better inventions.  I found that they spend more time with the patients and it's easier to get an appointment with one.  Let us know the results.

     

    Take care,

    Kelly

  • 342. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Hi gang.  Dean went to see the PA yesterday & had blood work done including hemoglobin A1C.  We don't have any results yet but they should be calling us soon.  If I don't hear anything soon, you know me...I'll be calling them!   Well, I have some news.  I received an email yesterday from the National Marrow Donor Program saying that I'm a potential match for a patient in need of a transplant.  The search is still in the preliminary stages so I don't know if I'll actually be selected to donate or not.  When I called to let them know I would definitely like to donate, they went over the donation process (both marrow & pbsct)  and then asked several health question.  If I'm selected for the next level of screening, they'll do more testing to ultimately determine the best donor for the patient.  I truly can't think of a better way to return the "gift of life" and blessing that Dean & I received than to do the same for another family in need!!!  I'll definitely keep you all posted.....Betsy

  • 343. Re: Dean's latest challenges...
    pamd Registered Users
    Currently Being Moderated

    Betsy, this is an amazing and wonderful turn of events---I can imagine that Dean is cheering you on 100%! You'll have to let us know if you end up in the "finals" so to speak. Also let us know how the A1C turns out.

     

    Pam

  • 344. Re: Dean's latest challenges...
    KyGuy Registered Users
    Currently Being Moderated

    Betsy,

     

    That's great that you have the opportunity to return the favor.  I sponsored a registration drive and one lady called me when she was picked.  She was really excited.  My son was also chosen but they put him on permenant hold (we think his patient didn't make it).

     

    Aren't you in Birmingham?  I heard on the news this morning that Birmingham is in deep financial straits.

     

    Take care,

    Kelly

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