Gayle congrats! I am so glad you have found someone to share your life with. I keep telling my stepmom she should find someone but she just won't. I know it hasn't been as long for her but still I want her to not be lonely! again congrats! life is too short to sit alone!
Elaine

Dear Friends....Results from my visit at U of M, first he wants to start me on chemo...first choice, Cacogen, second choice Vidaza ... for 5 days and off a the rest of the month. He also recommend a bone marrow transplant which is really a T cell transplant, because they do not go into your bone marrow. You all probably know more about all this than I do. As we all know that there is no cure for MDS, just things to prolong our lives. As Mike said "hope'. And I have that hope. My experience at U of M was a positive one and the doctor talked with us for an hour. I have three siblings and two are going to be tested for donors. My sister who is 73 is over the age limit of 70. However, they live in upstate NY and I will have to have this done in Ann Arbor, Mi. I feel very bless that my sister and brother agreed to be tested. (if you want to know more about this donor thing, I would be glad to fill you in, but do not want to bore you all.)
I will have to be in the hospital for a month. Has anyone had this done? I would like to hear from you. U of M will check on my insurance and do all the work for me. You all know I went to the doctor on Monday had another aranesp injection and my hgb was 9.7 and yesterday it was 8.5...no more aranesp. The average age of persons getting MDS is 73....I was young at 62 y/o. I had 5 good years on the revelimid. Mike you are in the minority...70 % of females get MDS.
Here is another bit of information that I rec'd. I had breast cancer in 2001 had an lumpectomy and rec'd radiation. Then in 2006 was diagnosised with MDS. He said it is a causative assumption. This is a teaching hospital and they do statistic. I said " I should of had an mastectomy and no ratiation" and he said "don't go backwards...10 yrs ago I would had suggest the same". Thing are always improving and changing. Well, before this becomes a book will go for now. Love you all and send a huge to each of you. Sandra

Hi Sandra,

Well none of us like diagnosis and that stuff but I'm glad they have you on a plan. Today's infusion made number 115 of the Dacogen. It has very few side effects, the worst being some fatigue (but who's not used to that LOL) and for me the plumbing gets clogged. I don't qualify for the BMT due to previous heart problems and age but there are a percentage that find remission out of it so we'll keep the hope and prayers going up for a donor and success for you.

As for being in the minority with this stuff I"m used to it. I also have Chronic Fatigue and Fibromyalgia, both which are predominately ladies diseases. Mabye it's the ladies side in me thats why I don't mind carrying my wifes purse in the store when she is shopping or trying things on LOL LOL.

You also might consider having a port put in if they think the donor thing will be awhle. I fought it for a long time and wish I had done it at the beginning. They can use it for infusions, transfusion, and many other things as well.

Have a great weekend all. Find some reason to smile and have some fun.

God Bless,

Mike

Hi everyone! I'm still kickin', just other directed lately. My reunion with the gals was great as always, but when I got back, I knew I had only a couple weeks before my next trip, a week Bahamas cruise with my daughter. It's her first, and it will be a blast seeing her pleasure.

My count has been steady at 9.2-9.3 for six weeks. Besides running out of steam more often, I notice more shortness of breath now, & can't help but worry about catching bugs on the plane or cruise. I'll do my best with GermX & washing hands.

Gayle, I'm so delighted for you! What wonderful news that you have love in your life again. Go for it, girl!

Sandra, you have exciting days ahead with this transplant. Keep us posted on the details.

Becky, your count is very similar to mine, but apparently yours jumps around more. Do you get the max dose of Aranesp? Does anyone know when Aranesp might be stopped if the Hgb continues to fall? I don't see my oncologist until the first of the year. Because of my trips, I will also be going 3 weeks between shots a couple of times.

Cindi, you're in the sandwich generation, worrying about your mom and reveling in your daughter's upcoming marriage.

Elaine, I'm sorry to hear about your friend's wife. That was quick, just like my sister's husband last year.

Mike, I'm sure you look terrific with your wife's purse hanging on your arm. I hope it coordinates with your outfits, tho.

Birdmom....the traveler...how great to hear from you. I would suggest getting a blood transfusion before your next cruise. Especially if you going to miss a shot. I am glad to hear that the aranesp is working for you. It just didn't work for me. I can function on a 9 hgb, but now mind is below 8.5 and I can feel it. If I don't hear from the cancer center tomorrow I am going to have to get another cbc....I get tired of waiting for a doctor...sometimes you have to take control when you feel like your hgb is dropping. (they said they will call me when they get the chemo all set up. I know they won't be doing that until my blood count is higher. This is a catch 22. Stay happy and enjoy your trip with your daughter. Blessings. Sandra

Sandra: I know how you feel, I tolerated HGB of 9 for better than 2 years but when it goes below I have a hard time functioning. The Aranesp hasn't worked for me either and it seems neither has the Danazol. Do you know what kind of regiment they are going to put you on?

Birdmom, I never thought about a max dosage for Aranesp. I will check next week and see what he says. With all these chemicals we are taking it's a wonder we function at all. Have a wonderful trip, we look forward to hearing more on your return.

Stay well everyone. BJ

BJ, The doctor at the U of M suggested Danazol because there is more info on it. I just have to wait. I was getting 500 mg of aranesp, but it just didn't work at all. My hgb just kept going down.

Blessings....Sandra

Sandra: Will they consider a blood transfusion before starting treatments if HGB is too low. And where will you have to go for treatment.

It looks like we'll be going through this together. I think plans are for the first week of Nov. I'm hoping I'll feel well enough to drive to Alabama for Thanksgiving. Just have to wait and see. take one day at a time and get the most joy out of each day.

When Bob was in Vietnam he wrote in his letters," I hold your hand my love", we'll just have to hold each others hand as we start this journey together. Hugs!

BJ: Wow! You did for 2 years? No, I don't know if I will be getting Danazol or I can't remember the other drug. I live near a cancer center and I go there for these treatments. I believe they do a cbc and if your blood work is to low you have to get a blood transfusion.
Are you going to have a BMT?
I am a little confused what will you be starting? love ya SG

Sandra: Senior moment,chemo brain, whatever, I misread your message. I've been on DANAZOL for 2 months. 50 mg twice a day and Aranesp 200 mlg shots twice a month and my HGB still dropped to 7.7. so had the BT in Sept.

It looks like I'll be starting DACOGEN or Vidaza sometime in Nov. See the Doc on Sept 25 to see what he decides. Doc won't talk about BMT until I've been on Dacogen 4 months. I'll be 76 in January so not sure if age is a factor or even if I want to. I had a casual friend offer but she has to be tested to see if she is a match.

The Dacogen regiment is 5 days a week repeated every 4 weeks. Mike, I know you've been doing this for some time and I commend you. Not looking forward to it but I'm sure I'll find the strength when the time comes.

October is always busy promoting Beast Cancer Awareness. We did two events Sat. one Sunday, one tonight, and two on Thursday so my mind is occupied and not thinking much about MDS. I did have to bow out of one Friday evening as I was just too tired.

But hey, Life is good, enjoy the moment. Hugs! BJ

I take 300 mg Aranesp every 2 weeks, which my doc says is max dose, so I was surprised to read that you were getting 500, Sandra. Oh well, moot point as it didn't work for you. I'm worried that it's not working for me any longer, but I don't see my oncologist until early January.

Same goes for getting a blood transfusion, which I've never had so far. I'm still debating how I want to handle my future treatment. None of these things cure us, just help us function better for a while. At my age (72), I am not even hoping for a cure. That's why I'm living high on the hog for now. Sharon

Birdmom Mama never let's me know which purse she's going to use so I just have to take all the "looks" about my mismatched outfits in stride :-)

BJ - As I have said before the blessings of the Dacogen, among the work that it does are that the side effects, especially compared to so many other treatments for other types of cancer, are minimal. The chemo fatigue is most noticable, especially by mid week but not something you can't get up and function with - no marathon running though LOL. All of us are different in our reactions. For me the plumbing gets really clogged up for a week or so and sometimes I get sore lips. I have had night sweats a couple of times. The WBC obviously goes down and on occasion that in itself causes a fever. (My doc has an antibiotic prescription that I keep at the house so if my temp goes up and down I can call him and take that just to be safe) which of course is a big thing to keep track of. When we go out I'm a walking bottle of germX and do all I can to avoid those that are obviously sick.

BTW the main reason I have the antibiotics is that so far my fever, even when it jumped up to 102, has within a few hours, come back down. As we found out if you go to the ER and they see blood counts way down they want to put you in isolation and pump you full of antibiotics (normal treatment for many things we face) and typically don't listen much when you discuss what is normal for you.

Sorry to get long winded but just trying to encourage and comfort you some as the Dacogen treatment itself is not that bad. The rest is to try and give you some knowledge as the "not knowing" is usually the hard part.

Everyone have a great week.

God Bless

Mike

Mike, thanks for being there with words of encouragement. It's as you said, no two of us are alike. I'm having a hard time functioning in the morning now...no energy and to go for treatment 5 days a week is my biggest concern. Just have to wait and see.

Sharon, I did ask the gals in the infusion center regarding Aranesp and the regular treatment is 200, I really need to check with the doc about an increase in dosage. Glad you are able to take advantage of the time you have with family. Enjoy!

BJ

Shoot it's been a long time since I thought I had "energy as we used to know it" in the morning LOL but I always find plenty to let the feet hit the floor, give thanks and ask the Lord "ok what's next". As for the chemo I just go in, give the nurses and rest of the staff as hard a time as they will let me get away with (they pull out really big needles and I know I have to go sit down and behave LOL) and after and hour and a half or so head on out. While I'm there they have wi-fi so I take the laptop and if nothing else play games.

You'll do just fine I'm sure.

Mike

Thanks Mike, and I'm taking your advice and asking about a port. I went in for an MRI last week and the tech poked me 4 times. I was ready to walk out if the fourth one didn't work. I told him I needed a butterfly and he wouldn't listen.