The doctor at U of M did say that I got MDS at a young age...I got it 5 yrs. ago and I am 67. Becky, why did you have a MRI and did it turn out ok? At my hospitals because of cost, they won't use a butterfly. I am very lucky when I go to the Johnson cancer center, because that is all she uses. I asked if I could take some with me and of course they won't do that.
Mike: I am going to ask for a port because I only have one arm they can use to draw blood and for infusions. I had breast cancer on the other side.
Sharon: I was told when you go to the hospital they will give blood if your hgb is below 8, but at the cancer center they will send me for blood if I am in the 8's and have symptoms. I go as an out patient called ambulatory services. You all are great people and I thank you all for your support. God Bless....Sandra

Hi Everyone, I had to read back to check up on everyone's progress. I'm glad to see some new (or old) posters here. Wow, I can't believe you can get MDS at age 36! I'm so glad you are doing well and so happy for Gayle that you found love again.

Birdmom: please be extra careful on your cruise. I was sick for about 2 weeks when I returned from mine, virus turned into Sinus infection. Seems like Carnival is not very good at encouraging ppl to use the GermX. If you go to the buffet line, keep in mind all those hands that have touched those tongs! I never thought of that before. I'm sure I caught the crud from that, so carry your GermX and have a wonderful cruise thru the Bahamas!!

It's been a whirlwind week for us. My cousin was rushed to the hospital last week with Pancreatitis and kidney failure. This on top of Mom having a rough day and my Aunt reportedly on her last days with Parkinsons really shook me up right before my daughter's wedding. All is well tho, cousin doing better, Aunt hanging in there and Mom too. Wedding was spectactular!

Mom hung in there thru everything. Dr. tanked her up with blood and platelets so she'd be ready for the big Bday party and wedding. About 70 ppl showed up for her party; we had a picture montage and all the grandkids brought mums which we then planted in the yard. She was a trouper and stayed at the wedding until about 9pm on Sunday.

Oh, I got Mom a massage for her bday. Have any of you tried massage? We just did a chair massage and the lady used really light pressure. Mom loved it & wanted to take her home with her! It was her first massage ever by a professional. I need to ask the Doc tho if this is okay (massage can cause issues with the lymphatic system). Her counts yesterday were down to 1 on the white count (scary!) and 10 platelets and 10 red count. So, she got some OJ (platelets) and feeling much better last nite.

We're going to do her 4th round of Dacogen soon and then a new BM biopsy to see if its doing any good. Dr. can't or won't tell us her blasts score from the last one! My nurse sister is going home at Mom's urging this weekend, so Mom will be alone for a week or two. Not sure that is a good idea, but they've been together for 2 mos and really getting on each others nerves.

Sandra, I'm so happy to hear you may get a transplant. That is wonderful news and I hope they find a match for you! I think that's the best hope in keeping this disease at bay or giving you remission. Your lucky you're young enough to have!! If you're going to do the 5 day chemo like Mom, it's really been no big deal for her except the counts do go down drastically (at least for us). We went with her the first week or two, just to be sure that she didn't have a reaction and really the reactions have been very minor! Night sweats, fatique and as Mike says, some plumbing problems which she uses Metamucil I think. Mom couldn't tolerate the Aransep at all, so they switched her to Epogen and now they've discontinued that totally (not sure why...)

Chemo tip: DO be sure to use the recommended mouth rinse! Mom just recently got the mouth sores and had to get a special medication for those. This med made her sleepy, basically knocked her on her butt. So, she's learned to take it at night before bed.

Billie Jean/Sandra, I wish you the best on your treatment plan. Let family and friends support you and go along with you or get rides from the cancer centers if you need them. Mom usually goes in the morning about 9 and is done by about Noon; the fatique doesn't hit until later so driving for her is okay even at 89. She even runs errands some days after her chemo! Sorry this is so wordy, I'll try to check in more often. Best to all, Cindi

Hello all. I haven't been here in a while, but my first post was here and I still miss the Captain. My MDS morphed quickly into AML and I had a BMT ten months ago. It's all going well so far. Long road, but steady progress.
Had a sad day yesterday. A good friend who had her BMT at the same time as me lost her battle. We stayed in close touch throughout the process. I'll miss her, but will stay in close touch with her husband.
Hope all is going well for all of you.

Sandra, I won't be surprised to see my counts go into the 8s by early next year, but meanwhile I'm hanging in there. I will have to go 3 weeks between shots rather than 2 in the next couple months because of supporting the travel industry, & that may also have an effect on my Hgb.

Cindi, what a time you've been having! But all seems to have ended well. My GermX is in my purse, ready to go. Carnival has a dispenser of the stuff at the buffet line too, so I'll try to be extra careful this time.

Jon, what a pleasure to hear from you again. Yes, I still miss our Cap'n Chris. What a character & an inspiration he was! So are you in remission now, or still on the road to it? We'd like to hear more about you. Sorry about your friend who didn't make it. Gives you pause, eh?

Stay well, everyone. I fly home on Halloween (on my broomstick, of course), so I will check on everyone then. And wish me luck that I don't pick up any nasties. After all, I have another cruise 3 weeks later. Sharon

Hi, I'll be quick today, embarrassed to see how long my last post was...

Sharon, have a great trip and we'll look for you on Halloween.

Jon, good to hear from someone recovering and who was fortunate to have a BMT. How did you know when your MDS morphed to AML? Mom's counts keep going lower and lower. Her white count is now less than 1,000 which is real scary for me. They're keeping the other counts up with blood transfusions. Dr. says there's nothing he can do for the white count. Maybe I'll go to her next visit to see what I can find out.

I gave my first blood last week! We were having health fair; I went by to thank everyone that was giving and found out I could give, despite my recent travels to Mexico and Egypt. So, there you go, I'll be giving blood from now on. Have a good week!

I'd say don't worry about a long post...they put up with mine all the time. At least I havn't been tossed out yet LOL I'ts good to hear from and about you. I went in for lab to get blood transfusion today and the counts proved I needed it. Also had a platelete count of 9. We think that is from the chemo as they have been in the 30's for some time so Wed get race fuel and blood cork stuff LOL.

Have a great week all
God Bless,

Mike

Cindi, I wasn't 36 I was 62 y/o. I am glad to hear that your mother had a nice birthday. Wow! She doing great for her age. I think I just came to the realization what I have. I think I was in denial. However, I have hope and thankful for that. Thanks for the tips. You have the right to know what your mother's blast is.
Mike, I will never kick you out....you have been a good support for me.
I called my hematogist office today and his nurse called back. Stated the doctor will be in tomorrow and reread the reports from U of M and start me on chemo next week. I asked for a port and she thought that was a good idea. She said 'she will get back with me on Wed. if I don't have any info tomorrow. You have to be your own advocate.
She said that at U of M they do a temporary port....an outside port.
I don't know, but though it would make life easier for me and the nurses to have a port, so I took Mike's advice. I had cancer on the right side so they can only use my left side, which is not all that good.
jonbi: How was your BMT? Do you still have to have chemo and do you think I am correct about getting a port? Did you have to stay in the hospital for a month? I would really like to know how it went....thanks. Sandra

HI Sandra, I"m glad I've been any help. I"m suprised they only do a temporary port there as it is a day surgery thing and I went right down to infusion and had chemo in it. One of the things I like best is not having to worry about getting it wet in showers or moving it around sleeping on it. Besides I"m allergic to the adhesives on bandaids.

I go in for infusions or blood transfusions, most the time they just put a small round bandaid on andI take it off when I get home.. Sorry I was hard headed and waited so long.

Let us know
Mike

Hi..Thanks for the good wishes. I've been in remission for 10 months and all of my counts are good. The medications I'm taking are to prevent various infections and to prevent graft vs. host....that means transplant rejection. In terms of the port, I recomend one if you are having infusions often. It is easy to deal with. A bit annoying when taking a shower. Mine has been gone for months now because I only see my doctor and have blood drawn every couple of weeks. I haven't needed any infusions for months, but may soon need to get a five hour infusion of IVIG.
When did I know my MDS morphed into AML? My blast count went to 50. I didn't have treatment options in New Zealand and wasn't very ill, so I went to City of Hope and qualified for a BMT. During the three months of waiting for a donor, I had three outpatient rounds of Dacogen.....I probably could have borrowed some from Mike. Then, a week before my scheduled BMT....day after last Thanksgiving....Black Friday...my doctor called me and I had to check in for immediate intensive chemo. My blasts were in the 90s. That took a month. I spent three weeks regaining some strength and went back in for the very heavy chemo they give you before the BMT and then had the transplant....another month in hospital and then the slow climb back. I'm back to normal energy and better stamina and insulin free Type 2 control because I lost 35 or 40 unwanted pounds through the process.
My recomendation if you are considering a BMT; Have it.
Good luck to all.

jonbi....thanks for your reply...and Mike.
Last night I had a very bad experience. First I had bad chills...temp went up to 103.5 and it took hours for it to come down and when it started to come down, the sweats came! I even got nauseated with the weaknest. I feel okay this morning, but didn't go to church. I was on an antibiotic until a few days ago. Thurs. and Frid. nights had temp of 101. This only starts in the evenings.
I start chemo (Docogen) tomorrow. My siblings were sent their kits, so soon will find out if they are a match for my BMT.
Any comments on this fever thing will be helpful. Jonbi...I lost some weight because I had the sore throat, and now gain a few pounds. If I had twenty more pounds off it would be good, but not worrying about that now. Thanks for the BMT input...
This site is so good for me...been a BIG help. Thanks...Sandra

Hi all, we're having another rough week. Monday started out well with Dr. visit and numbers were actually up a little. Then, they gave Mom that darn Epogen shot and she has felt like crap ever since. No energy, no appetite, etc. Plus she's had an eye inflammation/infection for over a week now. Went to Eye Doc today and he says she's lost vision in the left eye, so now no driving. She has to go to Retina specialist on Friday.

Has anyone else had eye issues with MDS? Reactions to Epogen??Bless her heart, Mom is so depressed and won't admit it.

We're hoping to take her up on the B-24 bomber on Saturday. She was a Rosy the Riveter so this was for her bucket list. The local paper is going to do an article!

Sandra, sorry to hear about your fever. Its weird about the temporary port too. Do be careful and call your doctor! Mom is stubborn about that -- she was running a fever the other night too and too tired/sick to bother with calling the Dr. They need to get you an antibiotic if its over 101 I thiink. BTW, I just learned from our Dr. that antibiotics can suppress the bone marrow from producing white cells! Who knew! Since Mom's whites are low, she has to be very careful. I asked a ton of questions at Mom's appt on Monday. Dr. seemed a little miffed, oh well.

If her counts stay up, she'll do one more round of Dacogen next week. If not, then a BM biopsy to see if anything is working. He also informed us any cold or flu could be "life threatening", yet she won't wear her masks.

Hang in there everyone. I keep praying for God's will, not mine. Hugs, Cindi

Just checking in. I'm back from my cruise, & didn't catch anything--will wonders never cease!

I felt good thruout the trip & still do, but my Hgb count continues to drop a bit. Interestingly enough, R & W counts plus platelets are all up. After all, the important thing is not numbers but how I'm doing physically. I'm very grateful.

The nurse who gave me the Aranesp shot told me that there is a stronger dosage--500mg--but apparently not all insurance programs will pay for it. I won't see any changes anyway until January, my next visit with the oncologist. I will ask about it then.

Cindi & Sandra, my heart goes out to both of you. Keep us posted.

I am back....it was a long week, but now it is over. I finally got put on an antibiotic and no more fevers...I did get chilled during chemo, yesterday. I slept a lot during the week. I would feel good when I first get up and then no more energy.
Birdmom: Glad that you are back and you had a nice cruise...how wonderful.
Monday, my first day for chemo...It took 3 tries for them to get an I.V. started...the other two influtrated. I was lucky that I could keep it in all week. Good to get it out today.
I see my MDS doctor on Monday and my family doctor on Tues. Hope to get some more answers. The nurses ask do get another set of chemo in four weeks. I didn't have the answer. They did give me another shot of aranesp... I don't like it because it makes me ache. Like Cindi said.."like flu like symptoms."
I don't get blood work until Monday...so I do not know where I stand with that. It would had been nice to know what my counts were. However, I am going to hang in there and be positive and happy. That will come when I can get over the constipation..LOL
Cindi: Sorry to hear about your mother eyesight. I had some inflammation in my left (good) eye had some drops here and it went away. Just tonight...had some mucus in my eyes and had to rinse them out before I could use the computer.. Just had my eyes checked and got new glasses. Hugs...Sandra

Hi all, welcome home, Birdmom -- so glad it went well and you aren't sick! Did your daughter enjoy?! I hope the weather cooperated.

Well Mom had her 15 min. of fame on Saturday with the B-24 bomber we flew in. She had some OJ (platelets) on Friday so she was feeling pretty good on Sat. Some of our family came and a lot of TV channels were there, so she was on CBS and Fox Sat. night! It was such a blast and Mom said something about this was a highlight of her 89 yrs. She got to sit in the cockpit and they treated her like a veteran. She'll be in the Dallas Morning News on 11-22, senior section, maybe Mike you'll want to take a look at it. If I get a chance, I'll see if I can upload a picture (not sure how that works on here)...

My son took his Grandma to her Dr. appt for the first time on Monday (we're all pitching in). Her counts were up so they started her on her last round of chemo & then on Tuesday she spiked a 101 fever, so now she's in the hospital for the last 2days. I told her we tried to "spring" her, but our oncologist thinks she has an infection so they've called in an infection specialist. She did get some blood and IV antibiotics yesterday. The eye infection is still hanging on. My sister is back from San Antonio; thank goodness, so she can help be with Mom and get answers. Of course the doc came this morning before anyone was there!

Sandra, did they decide not to give you a port? Sounds like it was frustrating with the IV's. Hope your counts are up, just know they usually go down a little after the chemo before they go back up. Hope you're feeling okay. Take care everyone!

just checking in. good to see everyone doing fairly well! I have started having a little bit of depression now. I think the numb of all the losses this year are wearing off and realization setting in. I am ok though. missing Dad really bad today. much love and peace to you all!

Elaine