Does anyone know how is Cat Johnson? Haven't seen her on here in a while.

http://www.caringbridge.org/visit/catjohnson

Try Caring Bridge Web page. Try this link. She's been having
a tough time.

Spending my birthday with my mom here in Akron ohio her blood is pretty good at 9.9 usually it would have dropped maybe this new drug is helping but she told me if it doesn't that its her last chance with the chemo when I first startedd this group I was frantic but you all have become like family and your stories inspire me answer my questions give me hope ....And I thank each one of you for that your honesty of the good and bad helps ...I still say MDS sucks...lol

The bone marrow didn't respond to VIDAZA so I'm starting a new 4 month treatment. Today is Day 1 - Cycle 1 and thinking positive
that the DACOGEN will work. Schedule is the same as before...5 days a week, repeating every 4 weeks for a total of 4 months followed by a bone marrow biopsy to determine the next phase of treatment. Taking one day at a time and making the most of it. Life is good!

Good Luck Becky Jean and thanks for giving me the info on Cat. I'm so sorry she is feeling so poorly.

Joe started that trial drug yesterday and today he is feeling terrible. I think he is going to drop out as quickly as he dropped in.

All very discouraging but hopefully something else will come up and life will be good again.

I'm hopeful that the Dacogen will work for you.

Millie: So sorry to hear about Joe. What trial drug is he taking and what is involved. I was turned down from one trial due to my age but would have been hospitalized for a week if accepted.
This is such a roller coaster ride. Sometimes you have to remember that there is a light at the end of the tunnel.

It's always good to hear that people like Jeanie are doing so well. I planned treatments this time for my convenience. They wanted me
to start last week and I put them off to celebrate our 58th wedding anniversary. Just a date with my hubby at the National Harbor outside of DC. It's been built a few years and somehow we never got there before. Did a bit of walking around before lunch, it's a beautiful spot on the Potomac River, the weather was perfect not too hot and low humidity. Didn't get too tired.
Today is day Cycle 1, day 4 and tomorrow day 5. Returning for cycle 2 in 3 weeks. I have to believe that this will work.

Glad you found Cat's web site. I need to check in again. Keep us up to date on Joe and let us know what he decides to do.
Have a great weekend everyone, stay well. Hugs!

Becky Jean: Joe's trial was for eltrombopag; a drug which is supposed to bring up the platelet count. Joe asked the MDS specialist at Moffitt yesterday if he could be considered for a BMT for the answer was "no" with no explanation. Maybe his age, 78, or the fact his has a defibrillator. Who knows? But we were kind of hoping for that. Of course, now that I have read some of Cat's journal, I realize how traumatic that procedure really is. He is definitely out of the trial. Don't know that I agree but, bottom line, it is ultimately his decision.

I am really interested in your response to the Dacogen. If you do well, and I pray that you do, we will push that for Joe. Keep us posted.
Hugs back at you.

Take care and keep the faith.

Becky Jean how interesting that you mentioned National Harbor, My husband and I just spent 4 days last week at the Wyndham. What a small world! You are right it is a beautiful area. We very much enjoyed the walking & resturants. All the ones we dined in were very good. We also sat on a bench and watched the sunset. What a relaxing time. We are from Oklahoma and the vacation was much needed but it was alot warmer there than what I had expected it to be. All the walking around DC took it's toll on me along with all the days traveling. Long drive! I learned when I got fatigued it was time to sit or go back to the room. We didn't get to see everything we wanted to. Just so much to see.
I normally post on the low risk area since I am not in treatment yet. I realize the longer I can put that off the better. But I had an interesting appt this morning with my dermatologist. I have dermatitis and with MDS he said with my low immune system I need to be aware of changes with my body. Also he said that if he had MDS he would stay out of the sun since the sun breaks down our immune system. Has anyone ever been told this also? It seems like I learn something new everyday with this crazy disease but I also know that everyone is different.
Hope everyone has a safe weekend. As always everyone on here is my prayers.

Take care,
Janet

Hi everyone,
Looked back to see that it's been a while since I posted (4/22) but I have been checking in to read your posts and keeping up.

Just saw my doc on Thursday. My platelet count took a big drop, from 73 to 49 and HGB from 11.3 to 10.5. White count about same at 2.54.

So she wants me to start treatment. I have another BMB scheduled for July 12 and then the plan is to go on Revlimid and depending on my response also Vidaza. She has a trial study that she would like me to join. My immediate resonse is a big YES. I would like to help in any way so research can get some answers to this awful disease.

I guess there's a chance of problems with insurance so need to check that out. I am on medicare and have BCBS supplement. Since the study pays for most procedures I don't see that it should be a problem. Are any of you in a study? Any pros or cons?

We signed up for a trip to Colorado Springs starting July 28. I am apprehensive about starting Revllimid just before going away.I have no idea how side effects might affect me. Do you think it would be wise for me to insist on waiting till I get back?

Any info you can give me would be greatly appreciated.

Have a great 4th of July everyone. You're all in my prayers.

Sandy

Janet, I found it hard to believe that the sun could weaken our immune systems, so I looked it up. Here's what I found:

"What is less known is that the intense exposure to the sun can weaken the immune system. How?

"First the ultraviolet (UV) radiation from the sun causes the formation of free radicals. Your bodys supply of antioxidants are depleted when destroying these free radicals.

"Secondly, UV radiation may also raise levels of stress hormones, which will also weaken the immune function. Just be careful about too much exposure to the sun." Sharon

Wow- I am so surprised about the sun as I love summer and let me tell you I spend 90% of my time outdoors in the sun, slathered in sunscreen of course! Fortunately I have not suffered any negative effects of being at the beach except for a few extra freckles! I will definitely keep in mind the information, thanks Janet and Sharon.
Sandy, Revlimid has been a God send for me. Before starting it I was receiving almost 4 units a week with my hgb only getting up to 8 if I was lucky. The minute I started it any need for infusions was gone and within three months my hgb was in the normal range by six months I was deemed to be in remission and my hgb has been at the same 14 for over a year and a half. My transplant which at the time was considered 100% necessary for me has now been put on hold until God knows when. It really has been a great drug- however, I did have some side effects that only lasted for a bit. I developed a slight rash, itchy, kind of like a heat rash. That went away after a week. I also had some joint and bone pain, most specifically in my ankles which felt like I had sprained my ankles and my thigh bones which felt like constant growing pains. The ankles/joint pain came and went within 3 days. The bone pain lasted a bit longer but I found that walking helped alleviate this pain. This pain lasted a week or so. For both of these pains I did not need to take anything, they were tolerable but everyone experiences pain differently so do not feel like you need to stick it out if it becomes too much. The medicine is supposed to make you sleepy but i had a very difficult time sleeping when I first started it, four or five days in i was fine.Finally, I my most lasting side effect is that it affects my belly. There are certain foods- dairy, oils, fats- that I have trouble with and within an hour of eating them I need to be near a bathroom (sorry for the image) but I have a sensitive belly anyway! I am 38 and my mom tells me that my belly issues with food is more likely to be from getting older than the Revlimid, I refuse to believe this because then I would have to admit that I am getting older! Lol. I hope that I helped you a bit but again this is just my experience with the medication but I find knowing all the different experiences is comforting because even the doctors do not know every side effect. Good luck and let us know how you are doing. XX

Wow, thanks Jeanine for all the info. Sounds like Revlimid really worked well for you. I spoke with the research nurse this morning and told her I would like to be in the study. So on Friday I go just for blood work so they can see where my counts are at and the following Thursday (July 12) I will have a BMB.

It will mean a lot of traveling (52 miles one way) and often (at least once a week) for a while, but it should be worth it.

Hugs to all in this leaky boat.

Sandy

Janet: So glad you had a nice visit at Nat'l Harbor. Sometimes you just need to take time out for yourself. I finished Day 5 Cycle 1 on Friday and ended up in the ER on Sunday with an ear infection.

Blood levels were low on Sunday so no surprise when on Monday the doc ordered a blood transfusion. I think DACOGEN is a bit tougher than I thought. The dosage is calculated by BMI (Body Mass Index) and the doc said he would give me a reduced dosage to introduce my body to the drug. IF this was a mild dosage, I'm not sure I'll be ready for the full amount for Cycle Two. Just have to wait and see.

We did manage to weather the storm okay, La Plata got hit hard with the storm, even made the front page of the Washington Post. As for us, we had minimal damage, mostly debris in the pool. No lost trees this time...Bob just had to chase down a shutter. Some of our neighbors weren't so lucky. We lost power for about 6 hours and I was so happy to see it restored in our development but there are still people in the county without power.

Have a fun 4th of July everyone, stay well. Hugs!

Hope everyone has a Happy & Safe 4th of July!!!

I can tell you that Dacogen is one tough drug. As I reported last, I had a blood transfusion on July 3rd, 2 units. I thought for sure I'd be ready to dance a jig but the opposite is true. Here it is 6 days later and the HGB hardly changed. Usually it goes up to 10-11. Today it was 8.8, white count down as well as Platelets. I'm headed back tomorrow for another blood transfusion for red blood and platelets. Doc felt it was due to the chemo more than the MDS. I'm supposed to start Cycle 2 July 23rd but that may change. Just have to wait and see.

Hope everyone had a great weekend. We are happy to see a drop in the temperature in Maryland, over 100 degrees was a bit much, my fella said the pool water was too warm for him. Stay well.