[Beth Pilot]

Hi LeAnn! Thank you for your suggestion regarding the acid problems I’m having. Please let me send up a HUGE CAUTION!!! What I am dealing with is called GRAFT vs. HOST and is NOT something to be played with. There are protocols in place for helping your body deal with the different aspects of graft vs. host and the transplant survivor should NEVER try to self treat for any graft vs. host issues. Please contact your transplant team before making any decision regarding after transplant care.

Merry Christmas. Love to all!

[Beth Pilot]

Hey, LeAnn! Thank you for checking on me. Sorry to say I’m still not getting noticeably better. I have discovered that if I walk around the apartment for a couple of hours when the acid indigestion hits, it helps me burp and that is giving me some relief. Hope you are able to find some good answer to your questions. I’m sorry to bail on you. Between the GVHD issues, and the insurance issue, I’m just at my limit right now. I’m having trouble getting back to my follow up transplant doctor in the upstate (the one who will be covered by my new insurance in 2016). Currently they are not setting an appointment because they say they never received my records from MUSC. I don’t think they’ve ever asked for my records. I’m adding frustrated to my scared. Hope you are doing so much better than me right now.

[Beth Pilot]

Hey LeAnn! I remember asking questions about other cancers when I went to meet the transplant team at MUSC the first time. My question was something like, “Don’t we need to check me for like skin cancers or other cancers?” I was confused by the answer I got, but that’s why my mom and my adult daughter went to every appointment with me so that between the three of us we could make some sort of sense out of what we were being told. Oh, the answer was along the lines of: we aren’t even going to think about any other cancers at this time. We’re going to focus on the known MDS and after you get through the transplant we’ll address other concerns. Apparently that meant, let’s fight and win the battle we know about before we try to dig up more battles to engage in. It took me awhile to internalize that, but I get it now.

I’m still not able to focus on your numbers right now. I’m sorry. I tried everything I knew to get a handle on my numbers during vidasa treatment but I never really got it all down. Let’s mark that as over my head, especially for now. I finally slept 4 straight hours sitting upright in a recliner last nite. Sadly, that’s about all I can think of in number terms. LOL!

I would write your concern about your iron levels down on your doc questions for every visit until you understand what his explanation is. The vidasa is chemo, it is a low chemo drug on my “very lay mans” terms. The side affects are actually minimal compared to the people who have to have IV chemo for multiple hours a day, several days in a row. The vidasa is a quick shot given just under the fatty skin and then you go. Come back the next day for the same. My biggest problems were nausea, burning and bruising at the shot site. Check out the side affects of vidasa and be aware of what might happen, but know that everybody has a little different experience with it.

Enjoy your week!

[Beth Pilot]

Yay LeAnn! Holding pattern, lasting longer between transfusions, getting blood closer to home, being able to recognize what your body is telling you about your levels, you’re starting to sound like a semi-pro…hahahahaha!

Keep doing your research so you can help as much as you can. And keep asking your docs and nurse practitioner and nurses who are knowledgeable about this anything that you don’t understand. I hope the iron levels aren’t too much of a problem for you. I didn’t have any issues with that. My case progressed pretty quickly, though. My hemoglobin registered 4.6 in Oct. of 2013 so I got my first transfusion. Then I couldn’t get any of the doctors I was seeing to actually care about finding where my blood went so the next time I had a drop in hemoglobin (5.9) in Dec. 2013, I went to another ER and they immediately sent in a hematologist/oncologist and he told me I’m not going anywhere until they found out where my blood was going. (Yes, I almost always put terms in my lay mans terms). And starting Jan. 2014 I was doing vidasa treatment. Oct. 2014 was my transplant. Compared to some, my experience was pretty fast.

I guess we each get our own path to follow and each of our experiences, if shared, just help increase the information out there about MDS.

I’m still camped out in the recliner. Just occurred to me today that I needed a med today (or yesterday) that I wasn’t going to get until Monday due to my stupid decision to get it thru mail order. Anyway, I’m getting enough to get me thru till the whole script gets here and that is what should start making the burning lava rock that sits in my stomach calm down. Again, don’t wait for these things. I could be 2 days closer to feeling a little better if I’d been a little more pushy, I guess. I’m not comfortable yet, but I know I’ll be ok.

Have a great weekend!

[Beth Pilot]

Hey LeAnn! Thanks for heads up in my insurance dilemma. I’m trying to catch up on rest from these GVHD issues so maybe tomorrow will be my follow up day for that. My stomach acid has hit such an all time high that I haven’t been able to sleep more than an hour or so at a time for about a week. When I went for recheck, they told me to camp out in the recliner and don’t even try to lay down for a few days. It’s working, but with the high acid reflux I’m still having to eat some sort of crackers, toast, carb to soak up acid about every hour or 2 just so I’m not miserable. Whine!! Whine!! This too will pass, it’s just taking a little longer than I would choose for it to. The stomach acid issue has been my worst problem during all of the after transplant process.

I hope your recent transfusion went/goes well. I forget how lucky/blessed I am that my transfusions were happening just 15 minutes from where I live so no real travel time was required. Bless you for your strength during this phase of your treatment. Hopefully the transplant phase will be so easy for you that you will not have too much trouble.

[Beth Pilot]

I spoke to a couple of survivors of BMT who contacted me after I requested it through the LLS.org. One of them shared an extended story about a brother who received his sister’s stem cells and ended up with her different blood type afterward. I thought it was an amusing side-story. My point is, through LLS.org and through BeTheMatch.org there is a wealth of information just waiting for you to ask for it or search it out on line. I believe that we each owe it to ourselves to look for as much information as we can find. Good luck!

[Beth Pilot]

Thank you Site Administrator for looking out for my insurance concerns. I’m trying to get some much needed sleep so I haven’t checked this out yet, but I appreciate the lead and I hope to follow up tomorrow. I’ve never participated in a message board before so this positive feedback really helps me.

[Beth Pilot]

Congratulations on your beautiful baby girl addition to your family. I have to say your daughter gets all of the kind words and admiration I can muster for a woman giving birth! I just know that she’s going to do wonders for you in the coming months/years.

It sounds like you are starting to recognize when you need more blood. That’s also a helpful step in your care. I think that everything you can be conscious of and bring to your doctors attention is always in your best interest, as well as in the best interest of your doc and/or other medical team. I still make a list of “whines” to take to each visit….as well as a list of questions, sometimes the same question on multiple occasions because sometimes I just forget or don’t understand the answer. And I always have someone else with me to write down answers so I don’t have to try to remember so much. It helps.

So, each day since the doc reduced my prednisone to 20 mg has been a little harder on me. Sadly, I kept telling myself that I could wait till my next visit instead of calling. My bad. I finally realized yesterday that I wasn’t going to make it to later on this week, but since it was Sunday and I wasn’t actually going to have to run to the er, I waited till today and asked my mom to call. They increased my prednisone to 30 mg and advised me on how much pain medicine I could safely take so that I can make it a couple of more days. Please, do what I said and not what I do….call when you realize there’s a problem, don’t try to wait it out. If I had called last week I would probably be feeling ok now, not like a truck ran over me. Lol

Thank you for your concern and understanding on the GVHD. I’m still kind of new to these issues so I’m not being as smart as I should be about them.

I got really frustrated with the insurance thing and Obama Care and all, but then I was reminded that before the changes that have been made so far there were a great many more cancer patients who just had to forgoe treatment because there was no other option available. So, I guess it’s not perfect, and not the best it could be, but the insurance changes that have been made so far are helping and I can be very thankful for that.

Now is the time for me to remember that through all of this, God has it and I just need to trust in Him.

Let me know how you’re doing. I hope you do get to wait until Monday for your next transfusion. It seems like your current holding pattern is working ok for now.

[Beth Pilot]

I celebrated my 1 year birthday from transplant (non related, 10/10 match donor), on Oct. 29, 2015. I’m dealing with some liver enzyme issues due to GVHD but I have not felt this good since I first started “losing my hemoglobin” in Sept. 2013. It’s been a journey that has sometimes been a little difficult but as Sharon said above, just tell your medical team everything that’s going on and they will fix it. This has been the right decision for me. Thank God for donors.

[Beth Pilot]

Maybe try massage. I’ve used Icy Hot roll on before with some degree of limited success. Also, check your sleeping posture. I find that sometimes extra pillows are required to prop up overused muscles so they can rest. Just a thought.

[Beth Pilot]

Hey LeAnn! I’m so sorry. I logged on, read your post, had some responses I thought of while I was reading and then got distracted and never got back around to you. That sounds really sucky of me, but I’ll explain a little and perhaps you can forgive me. I hope.

One of the drugs they put me on for the liver issues has a ‘Take With Food’ sticker on it. I take it at 9 am and 9 pm. When CVS refilled that med, they did not put the food sticker on the bottle, and that’s not noted on my med action list for that med. So, I’ve been taking it at 9 pm with no extra food and by 11 pm I have been experiencing extreme gas and worsening heart burn or acid stomach. I haven’t gotten a decent nights sleep in about a week but could not figure out why my stomach hurt so bad at night. I haven’t called anyone to ask what to do because I guess I’m just not wired to call so soon, and I’m trying so hard to wait out the holiday week. My bad. Anyway, I finally looked up the new drugs I’m taking on DRUGS.COM and saw the food warning. Then I remembered the nurse practitioner telling me to graze on food all day and don’t try to just eat 3 meals a day. Well, after doing what I’m supposed to with this med, I’m finally feeling almost ok again. It was pretty rough for a few days and nights though. Starting with the night I read your last post and started to reply and the “acid bomb” hit my stomach. Hahaha!

I am sorry I dropped off the planet for a few days. Thank you so much for reaching out again. I’m very encouraged that you won’t have these GVHD issues with a related donor. You really are a lucky one with that on your side.

Somebody asked me just tonite if I could tell them what my current prognosis is. This is what I know: I am currently MDS free. I am 100% donor stem cells. I can’t spout years and life span anymore, I think because I don’t look at my life like that anymore. I did when I first began this long strange journey into life with and after MDS. I know that how I feel now compared to how I felt a year ago is almost like night and day. Even with the issues I’ve had to overcome due to chemo side effects and GVHD and whatever, I feel truly thankful and blessed to be where I am now and for the journey that has brought me here. I have met some awesome people both in and out of the medical profession. I have had people stop and pray for me in a restaurant just because God told them to. I have seen Gods hand touch so many people around me and I’ve felt God touch my life time and time again through this journey.

I think I’ve selfishly thought to myself that of all of the cancers out there, I’m thankful I got one that I can handle. Maybe all of us cancer warriors feel that way about what we deal with, I don’t know. Keep your faith, through all of this. It is very scary, but God is in control and is always there for you.

I hope your new grandbaby is perfect and beautiful and healthy and brilliant!!! Congratulations!

Thank you for your patience. I try to not flake out like that but I just got totally overwhelmed this time. Better now.

[Beth Pilot]

I’m starting to look forward to your posts. I like the way you think, I think. Anyway, it sounds like you’ve already done lots of research and are very comfortable with your transplant team, and that’s great. I loved my hematologist but haven’t seen her since transplant. I don’t know if I might gravitate back to her in the future, I kinda play that by ear. I’m getting the care I need right now so that’s all I worrying about. (Actually, until my liver enzymes went haywire with GVHD and they put me on prednisone to fix it I really wasn’t able to think through any form of decision about my medical care. I was calling that chemo brain, but I don’t really know what had me so muddled.)

I met with a transplant doctor at MUSC before I went there and thought that she would be my “primary” transplant doctor when I got there. They didn’t really handle things like that so I ended up seeing the doctor that was in charge of the program most of the time. They took weeks of rounds and it just so happened that I was in when he had his week. It all works out great though. Oh yeah, let me mention that whenever you are able to walk, now or during and after transplant, you really need to. If you can do other mild exercise, that helps too, but I know that the staff on the hematology/bone marrow transplant ward really encourage you to get out of the bed every day and walk as many laps around their area as you can each day, even 1 lap at a time.

Still have my fingers crossed about that grandbaby! Hope you are feeling good when it gets here.

This site has a great book called The Building Blocks of Hope Handbook. You should read it if you haven’t already. It took me several times of reading to get through it, but that was probably my first and best information to learn from. I had no idea what MDS was and had to argue with my mother about whether or not it was cancer to start with. We were all in total shock when I was first diagnosed.

If your transfusions are getting a little farther apart, maybe your Aranesp is working. It’s amazing to me how much has been discovered about treatment in just the past 5-10 years, if you don’t need transplant for another 5-10 years they may have this transplant thing down to not such a big deal. My friend who had multiple myeloma and had his own stem cell transplant only spent about 60 days after transplant waiting to go home. He looks great via FB and he’s a year out from transplant now. You just never know.

So, in my best opinion my GVHD has involved skin rash within the first 30-60 days after transplant. Then I had some chemo reactions in my mouth n throat n stomach n gastro tract. The next I remember is the sudden muscle weakness in my legs which was accompanied by pain in my knees. General weakness and fatigue with a lack of concentration and short term memory loss were there but not sure if those were GVHD or just me (LOL). My most recent was the complaints of bad mouth sores, trouble swallowing, loss of appetite, lethargy/exhaustion, all over dull pain most of the time, excruciating pain in my knees whenever I tried to bend down, and leg muscles that were so weak I could not get myself up from the floor without pulling myself up with my arms. Again, I can’t swear these are all attributable to GVHD but I know this is a pretty good list of “fun stuff” I’ve experienced since transplant. Don’t be too intimidated though cuz the list sounds so much worse than it seemed during the thick of it all. God brought me through it and now I’m here. That’s all I like to think about.

You see that tonight I’m all over the place with my responses to your last post. Sorry about that. Just imagine that my friend likes to call me “oh, shiny” or “squirrel” (think dumb blond jokes…hahaha). I’m having one of those nights. I hope we’re not hogging up their message board with junk they don’t want. I also hope that maybe someone else will wade through our messages and be able to get some information for themselves. It really sounds like you are starting to ease up on your fears a little. I hope so. I know that the more I know about exactly what to expect the better I am able to handle it.

Enjoy your night…..and COME ON BABY!

[Beth Pilot]

I had to reply really quick…..I laughed out loud when I just read your post! Thank you! My cat thinks I’m crazy, but I needed a good belly laugh and you just provided it for me. Sometimes those things happen…. Enjoy your evening

[Beth Pilot]

Hi LeAnn! I hope your latest transfusion went well. It looks like you’re averaging 1 transfusion per month. I think I was along those lines to start with but once the vidaza started working I didn’t need the transfusions any more until I went in for transplant. I did not have enough transfusions to warrant the iron overload issues. My hematologist told me that the iron overload wasn’t typically an issue until after 20 transfusions and I stopped so much short of that I had forgotten about that whole worry. And, we didn’t do transfusions until my hemoglobin dropped below 8. (Btw, my hemoglobin has been running from 12.5 to now 14 for the last few months. I can’t tell you how big a difference it is from just a year ago!)
You need to practice (play with) not having hair. Especially now that it’s starting to get cold. I promise that when it happens you will have so much else on your plate that it won’t be as bad as you think it will be. But get yourself used to seeing your pretty face defined by a beanie hat or nice scarf with no hair showing. I got to the point that if I was “in public” and my head got hot I just took the stupid hat off. I figured that the bald head couldn’t be any worse than the pretty blue surgical mask I was wearing. Hahaha! Please try to find your funny bone regarding looks, it’s not worth getting upset about. I’m currently taking lots of steroids trying to fight off a bout with GVHD (graft vs host disease) which has attacked my liver. I’m not sure if you’ve ever seen this but mega steroids cause you to just look swollen n puffy….like I do now. I feel so much better than I did a few weeks ago, though, I just don’t even care about the puffy.
Hair loss: I checked into MUSC for transplant 7 days before the actual transplant occurred. They put a tri-fusion catheter into my left chest for IVs. They gave me chemo to finish killing off my stem cells and break down my immune system so my body would accept the donor cells. I had the transplant (just like getting blood) and the following day they checked me out and sent me to a nearby suites hotel that they have a contract with to use for that purpose. I had to live there for 100 days after transplant before they would release me to come home (4 hours away). I didn’t lose my hair for a few weeks after the actual transplant. By that time I was weak and had issues with diarrhea that were hard for me to deal with so I actually looked at losing the hair as helping to not have to worry about that.
The chemo itself wasn’t bad. When the chemicals actually took affect….that was tough. But, like I said, the medical people who do the transplants know what they’re doing. Tell them EVERYTHING that’s going on so they can help you with it. Even if it seems embarrassing or not relevant, tell them anyway. It’s not like anything you’ve seen in the movies. You’ll be so much better than you fear you will be. Just remember, I’m just a little more than a year out and I feel almost like my old self (of course, some of that is the steroid but I’ll take it).
I do recommend that you research your transplant facility and Doctor and make sure they have experience and that you feel good about their care. Trusting your team is also most important.
You need to contact LLS.org and BeTheMatch.org and have them send you any information they can. They are extremely helpful. My daughter had a friend who called BeTheMatch and asked them a lot of questions (none of us had any idea what to expect at all) and they were so helpful and informative that the friend was able to come explain transplant and matching and all to my daughter and me. I was impressed.
It’s a lot of information to try to take in, and it’s scary. But while I was in the hospital for transplant I met some of the multiple myeloma patients and their families and I realized that I was the lucky one. I say that only to try to help you feel a little better about your diagnosis.
Good luck with your new grandbaby! Please continue to feel like you can ask me anything, if you think I can help.

[Beth Pilot]

LeAnn, I have forgotten a lot of the detail but let me share what I do remember. (I do have memory issues now) Anyway, my WBC and RBC were affected but not platelets. BTW, most blood banks will take donations in your name from your friends and family or coworkers so your charge for blood will be zero or minimal. You just need to contact the blood bank and set up your “account” and tell whoever gives blood for you to make sure they tell the blood bank they are donating for you. It doesn’t have to be your type, either. I had many people giving blood in my name to help me out.
I had lower back pain that started way before I knew I had MDS but my docs had not found out why and at some point had prescribed lidocaine patches. I had low dose pain meds that I was already taking for fibromyalgia, which causes pain all over my body at times. The pain I mentioned was related to the vidasa shots, though. I don’t know how to tell you without scaring you more, but the vidasa is a chemical that is injected just below your skin. After a couple of days, each shot became a burn on my skin and usually had an underlying bruise as well. Like I said, my experience may not be the same as yours or anybody else’s. I know that by the end of the shots I was starting to not tolerate them in my arms so we were down to legs and belly. On the belly, they happened to be around where my clothes waist is so I had to wear loose pants for about a week. That wasn’t too hard because of the weight I lost due to not being able to eat.
My MDS had gotten to the point that when they did do a BM biopsy all they could get out was bone and fragment. In other words, they could not get the liquid out that they prefer to have for testing. The vidasa slowed the growth of the bad cells to remission so that they could transplant my donor cells into me and there was a place for them to go.
I had to have transfusions rather frequently to start with during vidasa treatment. At one point I think it was 2 weeks between. That only lasted for a month or two and then it just started stretching out the time in between.
Try hard to not focus on the “years left to live”. Maybe I got that from the transplant time because I remember thinking the same things you’ve put into words as your worries before transplant. Now, I’m just very thankful that God carried me through all of that and that He provided, and still provides, exactly what I need at exactly the right time. I’m not back at work yet, and I may not make it back, but that doesn’t bother me anymore because I trust that God is in charge of my life and He will guide me to where I need to be.
As far as the hair……lol….I have had very long, very thick, naturally wavy, blond hair all of my life. In the past 10 years or so I started growing it out and donating it but still not having it cut above my shoulders. I had my daughter give me a short bob before I moved to the hospital where I had my transplant. Then when it started falling out one of the CMAs in the hospital buzzed the rest off for me at my request. I have a Merry Christmas picture of me with my bald head and my friend who had come to stay with me as my caregiver. By then, I didn’t care. But you can get a wig or scarves or hats. I had a lot of friends who sent me crocheted hats to wear as their way to show support. That was perfect for me.
I think my change of heart came about during my after transplant problems. I had a friend who was getting his own stem cells as part of his multiple myeloma treatment and his after transplant issues were almost identical to mine. But, like I said before…the transplant doctors knew exactly what to do with all the problems I developed and they fixed it in a couple of weeks. I’m still going for follow up care and they still know exactly what to do to fix the problems I’m having now.
You’re very lucky to have your twin sister who can donat her stem cells for you as well as take care of you afterwards, if need be. i hope I’ve shared something else that is helpful to you. I’m sorry about the lay men’s terms but I’m just not in the frame of mind to dig all of that back out from last year. I will, because I’m sure I’ll need to remember at some time. I just don’t feel like I need to right now. Hopefully that comes across to you as more of a self preservation reaction instead of a selfish or self serving answer.
Keep me up on you….Beth

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