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Jersey Guy

This topic has 29 replies, 1 voice, and was last updated 13 years, 1 month ago by ramey2148.

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February 7, 2011 at 7:04 pm #23079

simplistic007
Member

Jersey Guy it is so good to hear from you and always keeping us posted. God be with you and keep you strong.

Simplistic007

February 13, 2011 at 5:22 pm #23081

ramey2148
Member

Well I wwent to the doctor’s on Wed., as I do every week, and GAINED 3 POUNDS. First weight gain in 6 weeks. What a differance a week makes. I had my best week by far last week and it felt goood. I know I am still real weak but I will get stronger as the weather gets better. They took me off of tacro which is good and my Dr. held good to her word that if I gained weight she would not raise my steroids. Well until next time I hope everyone has a GREAT DAY.
Bob

February 13, 2011 at 11:37 pm #23083

Mary4Mike
Participant

Bob,

Congratulations!! Little steps, but as long as they are all moving forward, that is all that counts!

Did your doctor replace the Tacro with anything else? You must be experiencing little or no GVHD…..how wonderful.

Keep us posted on your progress!

Mary

February 18, 2011 at 4:03 pm #23087

simplistic007
Member

Bob, congratulations. I truly admire your strength and courage. This is great news. I am so glad to hear you are doing better each day. Keep strong, stay strong. One day at a time. God Bless. 🙂
Simplistic007

February 18, 2011 at 6:34 pm #23088

ramey2148
Member

Thanks simplistic.. I went to the Dr. on Wed. and gained another 3 pounds. Dr. was real happy again. I went for a MILE AND A HALF WALK TODAY. That’s by far the furthest I have walked in a while. My Dr. said she woulld consider aloowing me to come every other week if everything looks good next week. That would be a nice relief. Well I hope everyone has a GREAT day today!
Bob

February 18, 2011 at 9:41 pm #23090

Mary4Mike
Participant

Good job, Bob!

You really are on the road to recovery. You have a great attitude!

Keep it up!

Mary

February 24, 2011 at 5:50 pm #23098

ramey2148
Member

Went to the Dr. yesterday. Gained another 3 pounds and she was happy. My bloodwork was good. Since they have taken me off of the tacro my skin has broken out. Dr. has me putting steriod cream on it for now, but she did say it was GVHD. I hope that it doesn’t get bad and it’s just because they took me off of the tacro. I guess if that’s my biggest complaint right now I am not doing so bad. Hope everyone has a GREAT DAY!
Bob

February 26, 2011 at 5:18 am #23102

lindajo
Member

How is your weight. Within normal limits or low. What and how are you eating? Don’t be shy, ask for a referral to a nutritionist at your transplant hospital. Write down everything you eat between now and when you meet with them. You may need a higher calorie count than you are taking in. Are you exercising at all? Ask for advise on what would be the best physical activity for you. Whatever you do don’t eat turkey for lunch. That will always make you sleepy. Good Luck and Congrats on making it this far.

February 26, 2011 at 7:01 pm #23108

simplistic007
Member

Bob, this is great news. You are a great inspiration to me. Just about the time you went in for your transplantation my doctors were debating whether I had to go through transplantation myself. I was very lucky and thank God I was spared this process. I am being monitored and so far still good, but of course, it will always be in the back of my mind as to whether one day I will need to or not. One never knows and I cannot worry about it, but I have followed your recovery and you are a brave and inspirational person to me. I am so glad you are doing well. Keep up the strength, hope and faith and you will be good. God Bless.
Simplistic007

February 27, 2011 at 7:02 pm #23112

ramey2148
Member

Thank you simplistic. I value life and if I can help influeence one person to keep fighting then that will make me happy. I just want people to know thay are not alone.

March 9, 2011 at 5:42 pm #23113

ramey2148
Member

Well just got my 180 day bone marrow biopsy yesterday. I have recently broke out with skin GVHD so they are going to try to boost my steriods for 4 days and see if that works. If that doesn’t work they are going to put a central line in and draw my blood out a couple of days a week to put it under UV rays to relax the T-Cells and then put it back in me. I really hope that I just need to steroid boost. My blood levels were all great. My Dr. can’t believe how well I am doing because of the type of my cancer and how aggressive it was. I hope people are not giving up on this sight since I have not seen any posters in a while. Chris let us know how you are doing if you read this.

March 11, 2011 at 3:05 pm #23115

simplistic007
Member

It will be okay. Stay focus and positive. You have come along this far. Hang in there my friend. Take care and thank you so ever much for keeping us all posted. God Bless.
simplistic007

March 17, 2011 at 1:51 pm #23117

ramey2148
Member

Went to the Dr. yesterday and the GVHD has’t gone away yet. they are starting me on a new medicine called Sirolimus. If that doesn’t work they are going to put a main line in my chest, take my blood out, and put it under UV lights to relax my T-Cells. My red cells were 12.3, WBC 5.1, and platelets were 132,000. Bloodwork always looks good the Dr. says so I guess I just have to deal with a little GVHD. I also gained 6 POUNDS in a week. The ice cream shop opened up…..LOL Well I hope everyone has a GREAT day today.
Bob

March 20, 2011 at 4:25 pm #23118

ccpat
Member

These posts are encouraging! After being diagnosed with MDS/RCD 2 yrs ago, my husband has had 18 rounds of Vidaza which quit working in Jan. He’s had one Tx 2 weeks ago and they are now talking about BMT. Our appointment is with the BMT clinic Mar. 30. He is now 65, healthy, has a sister AND a brother who are perfect matches. My husband feels good, generally, just has pretty low blood counts. Your messages give us courage, so thank you for that!
Pat

March 21, 2011 at 3:28 pm #23119

ramey2148
Member

Pat,
Good Luck with everything. If you have any questions feel free to ask. There is a thread a little while back if you want to read through it. I basically let everyone know how I was feeling while during my transplant and recovery. It is not easy but it was worth it. It will be under Jersey Guy. Hope everyone has a GREAT day.
Bob
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