Newbie...both to site and MDS

[roger]

I'm 66 year old Lymphoma survivor and have been for 9 years..Praise the Lord. I am now being tested again and from what I've been told its not very promising. I should be starting Vidaza this coming week.

This is what i know I am dx'd with "refractory anemia with blasts" meaning there are some Leukemia cells.

I've been through CHOP chemo for Lympthoma and if you haven't gone through it.. it is a rough ride. I'm hoping Vidaza will be kinder to me.

If anyone can give me words of encouragement or have been through Vidaza treatment I'd love to hear from you.

I wish you all well and will look forward to getting to you better.
God bless us all
Roger

[edo288]

Hey Roger:

My course was administered over 5 days. Each day started with an intervenes drip of 10 cc's of Ondansetron and 10 cc's of Dexamethasone mixed. These two drugs used together were to obviate nausea. They left the intervenes port in and injected Heprin to keep the port from clogging. Then the nurses injected subcutaneously two shots of Vidaza (75 mg each). Each day they changed the Vidaza injection to spread the soreness around.

I had almost no side-affects during the course week except constipation (solved with stool softener) an some soreness at the injection sites.

During the first weekend following I took a real dip in energy. So, the following Monday, I called and set up an appointment for a transfusion. Tuesday morning I went in for a type and match plus Complete Blood Count (CBC) and, low and behold, they sent me home. Why? My blood counts had actually gone up significantly!

Hemoglobin from 9.3 to 9.4 g/dL,
Absolute Neutrophil Count (ANC) from 814 to 1,100 and
Platelets from 176,000 to 201,000.

Needless to say, I went home with a smile on my face! By the end of week two I have better energy than before I started and I feel good.

Best of luck Roger. Keep us informed of you outcome.

Regards,

Ed (age 70, RCMD)

P.S. It took me a month or more to gain some understanding of MDS. To help others I am currently building a web site regarding one-man's-experience. Check it out at http://www.ecomdevs.com/MDS_Symptoms.php and let me know what you think. All suggestions entertained.

[Neil Cuadra]

Hi Roger. I hope Vidaza treatment goes as well for you as it did for Ed. If you search these forums for the word "vidaza" you'll find many other discussions about it.

Ed: Nice website. I suggest that you start another thread to talk about your site and to let us know when the Treatment page is done.

[roger]

I was wondering why I had no replies to my origianl posts. Now i see the replies are no noted to my screen name...they are here at the site. I'm getting to know the site better and how it works.

Thanks so much for the two repleis of which I found both encouraging...exactically what I need at this point.

Again thanks and may God protect of us
Roger

[Neil Cuadra]

Originally Posted by roger

I was wondering why I had no replies to my origianl posts. Now i see the replies are no noted to my screen name...they are here at the site. I'm getting to know the site better and how it works.

Roger,

You might want to read the description of Thread Subscriptions. It's a way to tell the forum system to send you email when somebody answers by posting in a particular thread.

[roger]

Originally Posted by Neil Cuadra

Roger,

You might want to read the description of Thread Subscriptions. It's a way to tell the forum system to send you email when somebody answers by posting in a particular thread.

I did just that and a big thanks coming your way.

Can you tell me how to reply to the person I'm talkiing to such as when I want to reply to you as I am now?

[ann]

roger, I hope that my reply to your email didn't confuse you. I tend to get
to going and may write too much. I hope that you get as much from this site as I have. I still have unanswered questions, but will always wonder - WHY?
MDS was not something we have ever heard of and no one that we know had either. Hope your treatment goes well. God bless.
ann

[Neil Cuadra]

Originally Posted by roger

Can you tell me how to reply to the person I'm talkiing to such as when I want to reply to you as I am now?

I tried to answer that question here. If I didn't explain what you wanted to know, feel free to follow the "Contacting the Site" instructions at the bottom of the contact page: it tells how to email us. If you email us, we can give you more specific forum help by email.

[roger]

Two to go Mom/Tues.

All went well wtih no side effects noticed BUT today, day 5 I took a dive in alertness of spunk. I was on my back most of the day and was fine stayi9ng prone all day.

Is this normal so early within a 7-day cycle. What should i expect to feel during my 3-weeks off of the injections

Thanks all
Roger

[edo288]

Hi Roger:

It may or may not be normal (whatever) but the same thing happened to me the weekend after the first 5-day cycle. See my Vidaza Chronicles, bottom of the page. My blood counts continued down until, by the third week, I needed a transfusion.

Glad things are going well for you. Keep us posted.

Regards,

[roger]

<<the same thing happened to me the weekend after the first 5-day cycle>>

You metioned by the 3rd week you needed a tranfusion. How did you know? Were you given blood tests during your first 28 days?

As mentioned Saturday, yesterday, day 6 I was so weak I couldn't get out of bed and slept the whole day and night. Today, day 7 I 'm still weak but was awake and alert the entire day. Tomorrow and Tueday I finish up my 7-day cycle and then i enter into another unknown territory.

Ed you are a few days ahead of me so let me know how you are doing so we can compare notes.

Good luck

[ann]

Roger, doesn't your oncologist do blood work weekly? Sorry to hear that you aren't feeling well. My husband got another good report today. His counts were all still up and no shot of Procrit was needed. He had his 5th round of Vidaza last week. Felt a little "flat" over the weekend but I think it was his allergies and COPD causing him to feel bad. He just needs to get his breathing treatments done as prescribed and I think he will be okay. We are planning a short trip this week to visit the family farm in East Tx. so I know he is feeling much better. This is the first trip we have taken since diagnosis in June.
Hope you get to feeling better. God bless.
ann

[jerryo]

Sounds like several of us are on the same course.

I started my 2nd cycle of Vidaza on Monday.

Last Monday my weekly CBC draw showed my platelets dropped down to 11000K so I got a transfusion of platelets on Tuesday. This Monday's CBC draw showed my RBC's continued downward so I got two units of blood on Tuesday along wirh the Vidaza. It took over six hours. I hope we don't have to do that very often.

I also have a mild case of perferial neuropathy and all of a sudden my right leg hurts like crazy. My oncologist prescribed neurontin and vicodin but it isn't doing the job. That is why I am sitting up at 3:00 am writing this note. I have ice on it right now and that seems to be helping. If I get lucky I might be able to sleep a little bit here in my recliner.

[roger]

Reflecting on Anne's question I discussed this with my Onch and i am now being tested every other week or often upon my request. He told me why he had discontinued, at least temporily, the Procrit. It was becasue my levels had risen to within the acceptable level. Any higher and I coujld risk a stroke.

I'm now on the 4th day after cycle one completed and am happy to say I've experienced no side effects other than some constipation. Energy level is down but have not felt I'm near my nadir...in other words, so far so good.

Good luck to all of us and may God continue to bless us during this Thanksgiving time.

Roger

[roger]

Oh and about the Evening Primerose I've been using

See --> http://www.mdsbeacon.com/news/2009/1...njection-site/

I've been using it off and on and I have, at least at this time, no bruises in any of the injection site areas. Cannot say with certainty that it is becasue of the Primerose oil but as before, so far, s good

[ann]

HEY ROGER! Hope that your weekend is going good. We took our trip and had a wonderful time. 19 of my husband's classmates showed up for lunch and were all so glad to see how good he is doing. About half of the trees on our farm have been cut and the rain and muddy weather has kept them out this past week. Henry just had to get down there to see what was going on. We pray that he will continue to respond to the treatments as well as he has in the weeks past. His next round is scheduled for Dec. 7. Hope all of you folks have a wonderful Thanksgiving.
ann

[roger]

Ann, hey i just realized Henry's cycle coincides with mine. My second cycle will begin also on Dec 7th. I beleive that makes us "Chemo Cousins". Please tell him I will be praying for us both on that day and days to follow.

I am so pleased with his success so far and with the good Lord watching over us we will continue to do well throughout this process. So glad you hade a chance to see his old freinds from long ago.

Well stay well and I wish you and your family a very Happy Thanksgiving. We have a lot to be thankful for, don't we?

Love and good wishes to all of us during this special time of THANKSGIVING.

Roger

[ann]

I will give Henry your message. I try to get him to read some of these posts but he tells me I can take care of this part of the "treatments". I am one of those people who need to know all I can about whatever I am doing. He is of the opinion that I will tell him what he needs to know. LOL! I didn't think his counts were as good as they could be today but he didn't have to have a shot of Procrit (glad of that) and he is ready for the next scheduled treatment next week. We had a great Thanksgiving and are looking forward to being with family during the Christmas holidays. May your Christmas be merry and bright. Give those grandchildren lots of hugs and kisses. Ours are the bright spots in our days.
God bless.
ann

[ann]

roger, how did your first day of your cycle go? Henry's was good. He is doing so good. His counts are all up and the doctor said that we would go with the Vidaza for as long as it worked. He has not had a transfusion in 3 months. Praise the Lord! We are talking about taking a trip between cycles.
His next will be Dec 4. He is doing so good that the doctor said that he could come in every two weeks for lab work and to see her. She is as happy as we are with his results. Her office is filled with really upbeat, friendly. and caring people. Always a smile and a hug for the patients and their spouses.
Do you have a port to get your Vidaza? Henry was having so many transfusions at the first of diagnosis that they put a port in. It is a life saver for him. He hates needles. Another good news I want to share, our family doctor said that he didn't have to stick his finger to check his blood sugar because he had lost weight and was exercising he no longer had diabetes.
Hope you have good news on your end.
ann

[roger]

I wish i could say as well as Henry's. As it turned out I picked up a little cold/cough and doc put me on an antibiotic so cycle 2 will be delayed a week. But hey is that good news about Henry or what!!?

I love to hear good news as it encourages us all. Tell him I thank him and continued good luck with future trreatments.

[ann]

I hope that your cold gets better soon. Thanks for your encouragement for my husband. I pray that next week you will be getting your Vidaza and back on the track to remission. That's all we can pray for isn't it? I just heard from a dear friend today whose husband has been fighting cancer for the past 2 years and was sent home from M D Anderson with no hope. His tumor is no longer visible on a CAT and the doctor is amazed. I know that prayer works.
I will keep you in my prayers. God bless.
ann

[roger]

Ann, I read <<and was sent home from M D Anderson with no hope.>> and was saddened until I read on. Such good news!!! Indeed I too beleve there is power in prayer. Tell Henry to create more good news for us to share with our 3rd cycle now one week difference,

Roger

[ann]

Roger, got a call last evening from a dear friend whose husband was sent home from MDAnderson with a diagnosis of no hope. He underwent many rounds of chemo and radiation because he wasn't ready to give up. His latest CAT showed no tumor. His doctor said he just didn't know how it happened but it did. He is determined to walk again and is going to rehab
to hopefully do that. They live in El Paso and we plan to meet in the middle as soon as he is able to travel to celebrate. Don't ever give up! Keep fighting. God bless.
ann