Scared …..

[Shea P]

This is my first time posting, I’m a 58 yr old black woman recently diagnosed with MDS. Would like to know if there is anyone like myself. I did not have cancer prior to this and have no other health issues.

[LeAnn Duke]

Hi Shea,
My name is LeAnn and I have recently been diagnosed with MDS too. June 1st of this year to be exact. I am a white 58 yrs old female. I have the Refractory Anemia with ringed sideroblasts. I have been taking the shot Aranesp for the last 12 weeks, one shot every three weeks with the hope that they will help my bone marrow to produce more red blood cells. Right now my Red blood cells are all that is involved and since June I have had 4 transfusions. I look forward to talking with you and being able to share whatever we may have in common with this disease.

[Anonymous]

Hi Shea, Where do you live? The MDS Foundation has scheduled free upcoming MDS Patient Forums in a good cross section of different cities nationally. Whether you are a newly diagnosed patient, a long-term survivor, or caregiver, this event will have something for you. Aside from having a wonderful breakfast and lunch you will meet others like yourself. You will also learn from experts about treatment therapies and strategies for Patients & Caregivers LIVING with MDS.

[LeAnn Duke]

Hi, my name is actually LeAnn. I sent Shea a message to see if I could talk to her about her MDS diagnosis. I live in Tennessee. I have recently been diagnosed with MDS as well (RARS). I am hoping to connect with someone who can correspond with me about this disease. Thanks so much!

[Lisa Free]

I am a 51 yr old white female and was diagnosed with high risk mds, raeb2 with excess blasts transforming to aml 2 years ago. I underwent a stem cell transplant December 2013. It wasn’t easy, but I am alive and have no major problems. I do have some gvhd, but my Drs are keeping it under control with a maintenance dose of tachrolimus.
I don’t fit the mds patient and I really should not have survived, but it does happen. All my Drs say I am here today because of my positive attitude and refusal to give up. Throughout all my months in the hospital, no matter how bad I felt, I got up, got dressed, put on at least some make up and would ride the stationary bike. I made my own bed everyday and just continued to try and live.
I would be glad to answer any questions if anyone has any.

[LeAnn Duke]

Hi Lisa,
My name is LeAnn and I am 58 yrs old. I posted a few days ago that I have Refractory Anemia with Ringed sideroblasts. I have been categorized in the low risk category for MDS. The Dr. suggested we try injections of Aranesp so I have been taking 500 mg every three weeks since June 26. Tomorrow is the day we find out if the Dr thinks the injections are working. He said if Aranesp works (“IF it works” and he said that twice) that I could do that for several years and my prognosis is 8.8 years and then we would look at a transplant (when Aranesp stops working). But I have had a transfusion about every three and a half weeks since we started the injections. I feel like my hemoglobin counts are dropping even now, but won’t know until tomorrow of course how low. I usually drop to between 7.4 to 7.0 and it has gone as low as 6.7 with hematocrit at 21. I can say that since I started the injections I am not as symptomatic. I have had some changes in my body which confuse me because I beigin to think it’s working the I go back and the hemoglobin and hematocrit level are still low enough to send me in for more blood. Of course I don’t know enough about blood counts to know what this means other than it worries me that the shots are not working. It is very unpredictable and when I think they are holding, they show up low again. Did you take Aranesp or Procrit and did it work for you?

The Dr. mentioned the next step would be a medication called Vidaza. Did you take this med before your transplant? Were there any bad side effects? How did they administer this med? Daily shots at the Drs office or IV in the hospital? We live about 2 hours from my dr and the hospital and am wondering if we will have to drive every day for a shot. And from what I read some say the shots are 5 days a week and others say 7 days a week. The closest Cancer Center is not connected with my dr and they closed on the weekends anyway. I guess every place is different though!

The good news is I have a twin sister that is going to be my donor and they say that is a very good thing. They say that is like having gold to the doctors!!! Did you have a sibling donor or a stranger donor? I guess my question for the doctor tomorrow will be (if Aranesp is not working) is what are my chances with the Vidaza, how long will I be on it, and after the stem cell transplant what is the normal prognosis for a transplant patient with an identical twin donor?

Another thing is that my twin sister’s husband has undergone a stem cell transplant for multiple myeloma almost 4 yrs ago so she knows first hand what to expect in helping me afterward. She of course was not a donor then. They were able to use his own stem cells.

Thank you for taking time to read this and if you can offer any help I would appreciate it. I don’t feel very brave when it comes to chemo!! That scares me!! I feel like I am positive about this disease and the disease itself doesn’t scare me. Actually, death doesn’t scare me. It is the being sick with chemo frightens me the most!! I don’t want to sound vain, but losing my hair scares me and then whatever ill effects my body suffers after chemo scares me!!

I am glad you have done well with the transplant and that you are alive and doing as well as you are. Would you mind telling me what GVHD is?

[Beth Pilot]

LeAnn,
I am a 53 year old white female. I was diagnosed with MDS in Dec. 2013 after my hemoglobin dropped to 4.6 and then 5.9 six weeks later. (I joked that somebody was stealing my blood and I wanted a doctor to find out where it was being taken.) I was in shock and extremely scared when I heard my diagnosis. I was diagnosed with fibromyalgia in 1999 and found that I had to do the research to find out what that was and how to best deal with it. After going through the soul searching part to find out how I really felt about dying, I tried to listen to my body and not overdo it, and research any information I could find about MDS. I also used what I learned to try to educate my friends and family as well as co-workers. Trying to answer their questions (after pushing them to ask me), helped me to keep digging for information.
I took the Vidasa shots starting in Jan. 2014. They gave me 2 shots each day in a fatty part of my body. It helps if you plan these out carefully, when you see the chemical rash/soreness that happens you’ll understand that. I just popped into the infusion center at my cancer clinic (it was only 2 miles from where I was living) each day for 5 days. I tried to start in belly fat (my stretch marks made good already numb places for this). They’d do 2 shots on right belly, then the next day it’d be 2 shots on left belly, then 1 shot on each outer thigh (don’t tighten up!) and then 1 shot on each back of arm fat, and then back to 1 each side on belly. I found out that my arms couldn’t stand the shots after awhile so I had to really plan that out. You probably want to skip from 1 area to another so you don’t bunch them up. They do get quite sore, but usually by the following Monday most of that was gone.
You need to always remember: there is a medication that will help you through all of this….you need to ask for it and you need to take it. I always took 1 Zofran about 30 minutes before I got my shot. Then within 2 hours after the shot I took a Phenergan. I’m sure there are those who are screaming “no” right now but I’m telling you to find that rhythm that works for you and stick with it, unless you find that you need to adjust it. I took Ativan for uncontrolled crying and/or that feeling that you’ve lost your sanity. It also helps for mild pain and for mild nausea (I found that out while I was in the hospital for transplant). Then there are pain pills. I took Tramadol and if it was too bad oxycodone. Do not take it all at 1 time, you need to find out what works. Caution: do not take these if you don’t need them because if you go for transplant you will want to have these as part of your Arsenal. I think of fighting cancer, not surviving it.
So, Vidasa shots do burn and cause a sore spot like a bruise. That will pass, though. Find something you can eat, preferably protein strong. I found that I had trouble with dry foods, like a sandwich had to have enough moisture for me to not notice the bread or toast it was on. Give yourself a break and go with what your body can handle during those shot weeks.
Ok, 2 shots each day for 5 days, then just blood work for 3 weeks. Then back to 2 shots each day for 5 days. I did that from Jan. to Sept. last year. By Sept. my bone marrow biopsy showed the MDS was at bay, ready for me to receive a stem cell transplant. My donor was from Germany, not related. But apparently we were stem cell besties because my issues have been limited and I no longer take the tacrolimus to combat rejection. Nobody really asked me whether I wanted a transplant, I think I didn’t really have a choice (like transplant or die). I’m not complaining, I just noticed a lack of discussion there.
I truly wish you good luck in your treatment. i don’t know how you’re going to get the shots done from so far away, but I know that once you start making that trip it just becomes part of your life. Make sure you have somebody with you to drive just in case you can’t. And remember, you may not have ANY problems, so don’t over stress about it. It is a chemical shot, so it does have to be administered by someone who has been trained in that.
Please feel free to ask me anything. I’ll tell you all I can about my experience, just remember that your experience could be very much better or worse than mine. Please let me know how you’re doing.

[LeAnn Duke]

Hi Beth,
Thank you so much for responding. I had given up hope that there was anyone out there that cared enough to respond and give any information to us newbies!! I am at this point not taking the Aranesp because it didn’t work to raise my red blood cells. Could you tell me if your WBC or platelets were involved in your MDS or is it just your RBCs?

For now the Dr has decided that since I am still considered low risk that I am a good candidate for transfusions for the time being. I am due for one this coming week and at present am only having to do one per month. He feels that starting vidaza would involve the WBCs and platelets needlessly. Because this is an unstable disease it is my understanding that things can change at any time. When they do then we will look at Vidaza as the next step.

I really appreciate your detail about how the vidaza is administered and that there are two shots each time. I try not to stress over things but do want to know exactly what I am facing and up against!! The more I know the easier it is for me to deal with it.

Let me ask you: You mention the pain involved. Are you talking about before or after the transplant? Or during the transplant? What kind of pain and where? I knew about the anti-nausea meds and that they encourage you to take them which I have no problem with. I will definitely be asking for them!! I don’t like the idea of being sick or in pain!! Call me a baby, but I am definitely a sissy when it comes to nausea and pain!!!

Can you also tell me what your doctor said the vidaza is supposed to do? How long is a normal time to stay on the vidaza and what does “at bay” mean before the transplant?

I realize thata I may be several years away from a transplant, but then again if this disease changes with no notice, I need to be prepared.

How are you doing now that you have had the transplant? How long do they say the transplant will last if they know? My dr has consistently told me there is no cure for MDS and the transplant will help to extend my life but not save it. I realize that we are not promised tomorrow and that I could die from something else before the MDS takes my life. I don’t want to die, but if I am not necessarily afraid of dying. But if I can fight this disease, then I will do it as well informed as possible.

Thanks Beth for taking the time to answer some of my questions. I hope they are not “all over the place”. I asked them as they came to me!! God bless you!

[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

[LeAnn Duke]

Hi Beth,
I’m so glad you responded so quickly. I really do appreciate the laymen’s terms because I am new to this, just 7 months in. So I don’t know all the medical terms and don’t understand some of them. I am typing this today as I sit in the hospital bed for my 7th transfusion. My levels weren’t as low as they have been before but we are expecting our 7th grandchild any day now and I wanted to be there for her delivery!!!

You have covered several things in this letter that I have wondered about. I dreaded the chemo and losing my hair more than anything else. Call me vain but I am used to my hair even when it doesn’t do what I want it to. It is still mine!!!! I told my husband that i would be looking for a wig or something cute! My sister crochets so I might be hitting her up for some cute hats. That’s a great idea! I will keep her busy!!

I have also read and heard the horror stories about the sick, sick feeling that chemo brings but I know that the anti nausea meds are much different and more available than they used to be so I am ready, willing, and very much able to demand them when I want them!!!!!

Please don’t be afraid of scaring me more than I already am. I am a realist and have that “need to know” type of personality. I want to be prepared even though I realize that it may be some time before I actually have to take that step. I don’t want to get ahead of myself or my doctor but I want (need) to know what to expect!

My husband and I are working to learn and understand as much as we can and we are really glad that my sister knows some of the things to expect when the time comes for the transplant.

I do remember my sister telling me that her husband who had multiple myeloma had to take a med that boosted his stem cells and that caused some minor bone pain. She was curious what she would have to undergo when the time comes for her to donate. But i convinced her that it wasn’t quite time enough to ask the doctors because the actual transplant doctors are associates with my hematologist/oncologist but not in the same building or hospital. So I don’t even gt to ask all of my questions either. She lives in Florida and I live in Tennessee so it won’t be hard to do all this but will be best to wait a little till things begin to change.

I have realized that life as I have known it has changed and I won’t have the same energy as I once had. I will try to have as much joy and as many good days right now, because I know once this disease begins to change there might not be very many good days.

Do you mind telling me if I’m not being too nosy, what kind of issues “after transplant” are you dealing with? I read many clinical studies from different cancer centers and they talk about patients with MDS (different types) and they talk about the prognosis of those patients but they don’t talk about the previous medical problems of these patients. I have been very fortunate to be very healthy before this. NO heart, blood pressure problems. I am not diabetic. I was a kidney donor 13 years ago and take only a supplement for thyroid and my hormones.

I also had a little trouble with having no appetite and my taste buds changing somewhat. I think that alot of that was due too the Aranesp. That has kind of changed now. At first I couldn’t stand the sight, smell, taste or even the feel of chicken. But that has gotten a little better. At least I can cook it for my husband now without thinking of throwing up. I also had a real problem with sweets at first too. Just had trouble finding anything that sounded appetizing at all. Beef and barbeque pork always was a hit and shrimp tasted good. I haven’t lost any weight and still have to watch my weight so I don’t regain what I lost about 3-4 years ago.

You mentioned that you have memory issues now. I sometimes struggle to find my words but mostly when my levels are low. That is another key to knowing when I need to get some blood. Did you ever have to deal with iron overload? That is another concern my doctor has with being transfusion dependent. If I begin to need blood twice a month then we will have to watch my ferritin level because it is already high. Did you have high iron too or was it normal? What do your levels run now and how often do you go to the doctor for check ups?

I hope you are having a good day today. I look forward to hearing from you whenever you feel like it. I certainly understand the lack of energy or interest in talking or communicating sometimes!!! Sometimes just to text is too much effort!!! lol!!!

[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.

[LeAnn Duke]

I am so mad right now!!! I started to answer and stopped to look something up and lost the whole reply!!! UGH!! I will finish when I am not as tired and can think of what I want to say. I will tell yu though that my husband appreciates you sharing your experience with us as much as I do! He says whenever I read it to him how much it helps him too!!! Will try to respond tomorrow when my brain is fresh!! Have a good night!

[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

[LeAnn Duke]

Well as you can see I didn’t get a chance to respond yesterday. By the time we stopped yesterday I was too tired to do much. I am feeling good from the blood transfusion this time around though! My levels had dropped from 8 on the Thursday when I had them checked to 7.2 on Tuesday when I went in for the 2 units. So it was on its way down, but not as low as it had gotten the month before, so it didn’t take as long for it to kick in and make me feel better!! So I have had 2 really good days where I feel almost normal. There is still always a little heavy heart beat when I exert, but for the most part I don’t poop out as fast as when it is down. We have been trying for two years to get an antique secretary refinished and finally Saturday we got it moved into the house from the garage! It has been a big challenge what with the weather being either too damp or too cold or too hot or me just not feeling like messing with it. We stripped off some ugly green paint with a faux finish and I must admit I had murderous thoughts toward the folks that painted it. It is a beautiful mahoghany piece and though we are novices at refinishing (did the best we could) it is still far prettier with the paint off and restained and polyed!

I hope this GvHD doesn’t last too long and the steroids help soon. I read up on that a little and it sounds like it is pretty common with allogeneic donors. I am hoping since my twin will be my donor that I won’t have that issue. Do you know how long this problem typically lasts? What kind of symptoms did you have to let you know something was going on? Jaundice or blood levels wacky or something else?

You mentioned the hair thing!! I used to have real long hair, thick, thick hair when I was young, but have had it cut short for many years now. It just was too difficult for me to handle it. It was either pull it back or let it hang and it wsa always too thick for the then “current” fasteners to hold it on top of my head! So I cut it, then let it grow just to about my shoulders and permed where it was super easy to take care of. But my hormones were all out of whack and perms stopped holding and I jsut couldn’t deal with straight hair, so off it came! I have had short hair now for about 23-24 yrs. Different styles, different colors, permed, straight, just about anything you can imagine. But I cut it myself and I usually trim it when it starts bugging me, so it doesn’t change much. The only way I haven’t tried is bald!!! Hahaha!!! Maybe I’m due for a change! Yes, that might be just what I need! I will try not to be too particular when it’s time for someone to shave my head!! I do realize that there is so to take in and when you are going through it, hair is the least of your worries. I will tell you that even now sometimes it’s all I can do just to hold the hair dryer long enough to blow it dry. So as I progress with this I am sure it will get worse and I will probably go back to one of the shorter cuts I used to wear so I don’t have to mess with it. My twin (Linda) wears hers shorter and we used to have identical hair styles so I could easly go back to that and mousse it, style it, and go! Then when it’s time for it to all go, it won’t be too bad!

I knew about the stay after the transplant. My brother-in-law was at Moffitt Cancer Center in Tampa for his transplant for multiple myeloma. I went down to help my sister care for him afterward. Basically I went down to help her keep the apartment they were in clean and disinfected and to cook when she was tired. They really did well with his recovery time and he did so well with his own stem cells that he got to come home about 3 weeks before others who had a non-related donor would. He was lucky! He is still doing ok and his numbers/levels are holding very well! December will be 4 years since his transplant! I guess I will go to either Centennial or Vanderbilt Hospital in Nashville when it comes time for mine. I know a lady who also had multiple myeloma who has the same Dr. I will go to for the transplant. I have met him already and there is a team there so I’m not sure which one will actually do it. She loves him and said he was an awesome Dr. I really have a good hematologist too! All the nurses at the hospital love him and have nothing but good things to say about him! I will definitely research things though. The thing with my stage right now is that I am low risk and am not seeing anyone related to the transplant side of things yet. My hematologist is monitoring everything and watching all my levels and seeing me once a month right now.

Thank you for the two sites you mentioned to contact for information too!! I will check with them and see if they can send me some information and study it so I cna be prepared for when things begin to change.

I know you started with both your RBCs and WBCs involved so you moved at a faster pace than I am moving. I guess for me right now that’s a good thing. I do have the concern that if I stay at this stage and am transfusion dependent for several years, then my twin will age out of being able to be a donor. They told me 65 yrs old was the limit for a donor. I have an older sister who is already 64 and a younger brother who is 50 almost 51, so if LInda ages out, then my brother has offered to do whatever I need. I am blessed to have them in my life and appreciate so much their love for me and willingness to be a donor. I have a brother who is a yr younger and he has never even called when he found out I was sick and has never mentioned being I donor. I think he doesn’t like me that much!!!

Anyway, I don’t worry too much, because I realize that I am not promised tomorrow and something else could take my life before the MDS does. God is in control and will provide what I need when I need it!! I truly believe that!!

By the way, no baby yet! Today is her due date so we are in the wings waiting!! Have a great night!!!

[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!

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