[Marcla]

Trish, My warm and heartfelt prayers are with you as you get throught these sad days. Keep the good memories close at heart
and let God give you peace and comfort. I, too, recently lost my companion and best friend to this awful disease, so I can relate to your feelings at this moment. Keep strong and know that he is now free of all pain and walking the streets of gold. This has been my comfort….I hope it can be yours.
Marla Clark …. marcla@consolidated.net

[Marcla]

Dear Bev,
I followed your Caring Place journal and was saddened to see Barry lose his courageous battle. Now it’s time to let your heart start on it’s journey to healing by feeling the comfort memories bring. My companion, Ralph, also lost his fight against this awful disease on Feb. 18th, so we were also dealing with the frustrations of trying to do our best and make the right decisions. One minute I’m reliving the good times we had … the next I’m crying for what the future could have been.
So, Bev, I know the feelings you are experiencing. May God’s arms gently hold you and carry you through this difficult time. Please be in touch by email if you would like.
In Christian Love,
Marla Clark
PS..My brother & sister-in-law were John & Florence Loos from the Pennsylvania area. Any relative?

[Marcla]

Jack, I have tried to send you an email. At the same time I was changing my email address. The change has been verified, but I’m not sure if you received the note. Could you let me know via email…. Thanks, Marla

[Marcla]

Zoe…Thank you for the condolence note. MDS is such a frustrating disease.. I admire the strong determination of the members of the forum to learn all they can about their illness. By following many of the topics, I acquired a much better understanding of what Ralph was dealing with. I will be praying for you …. Take care of yourself…. Marla

[Marcla]

To the Administrators…. Could you advise me as to how to locate the new website. I am missing the forum. Marla

[Marcla]

Joan… I want to thank you for posting the website from the Cleveland Clinic with the overview of MDS. I intend to forward this to Ralph’s children who need a better explanation than I can give of their father’s diagnosis of CMML and his treatments with Dacogen.
Marla

[Marcla]

Hi…Welcome to The Forum. I am glad you were able to find this site. You will receive a wealth of information and also support from the members who are going through many types of MDS.
Your letter was very informative, but more details will be needed before our more knowledgeable comrades will be able to help you understand some of the confusing details of MDS.
Being there for your parents is the best thing you can do. They are so lucky to have you.. Please keep posting and know that my prayers are with you as you deal with another health problem with your mum….
Marla

[Marcla]

Mary.. I only gave the actual infusion time. Bill is right in that it takes about 2 hours by the time everything is set up… Marla

[Marcla]

Hi.. Thought Ralph’s profile might give you an inkling of what he’s dealing with… I’m fairly new at this.. Marla

[Marcla]

Hi Mary.. Hope this helps in your quest for info on Dacogen infusions. My friend Ralph has finished a series of 8 treatments and after a BMB that showed better counts in most areas, his doctor decided for him to continue on with a 2nd series. This week he is doing his 2nd cycle consisting of 5 days of Dacogen 40. The infusion time is 1hr. 20min. He handles the treatments well but does get more fatigued as the week goes on and this lethargy continues through the weekend.
We are so thankful that Dacogen has worked for him and pray for continued good results. I am also glad I came across this forum which has helped me understand MDS through the input of the many members.
Wishing you and Mike the best…. Marla

[Marcla]

Jack…. I am a fairly new member of the forum and have followed your posts as you and Roseanne fought a valiant battle against this awful disease. Thank you for staying with the forum to share the vast knowledge that you have acquired throughout these years… Look to the happy memories for comfort. May God give you peace during the days to come… Marla

[Marcla]

Cami…. I understand your anger with your Dad’s report of a spot on his lung. I had a very similiar situation with my husband who was having short of breath spells. Fearing a heart attack, I took him to the emergency where the admitting doctor did a chest xray which showed a growth in his bronchial area. ( This xray was done after Jim had complained for several months of the same symptons to our family doctor and the VA doctor., neither did a chest xray). At that time he was admitted and run through all the tests, including a biopsy of the tumor…
I was very angry at our doctor for not catching this much sooner…. Ironically, five years later, and after my husband’s death in 2002, I still have the same doctor.
I am now dealing with MDS with my companion, Ralph…. he also received a dire prognosis, but fortunately Dacogen treatments have brought his counts up and he is doing very well.
Pray that the spot was detected early enough to give your dad a positive prognosis. I will be thinking of you as you deal with another problem. Sometimes everything seems to pile up at once … right now, think positive and (I dislike this expression, but it’s true) take it one day at a time. May God be with you and help you through the coming weeks…. Marla

[Marcla]

Alissa….. Congratulations on the birth of Nathan. It’s so nice to hear a positive story. May God bless you with a future of good health and much happiness with your new little one….
Marla

[Marcla]

Hi…Me again. Ralph has only been hospitalized twice. Once while we were in Florida when we had to use the emergency room to get his platelet and RBT’s. The second time was early April with a flu infection. Ironically, the transfusions he received while confined are the last ones he has needed…. Marla

[Marcla]

Sophie… Ralph reacted well to his first Dacogen treatment. No change in appetite, just a little more fatigue which increased as the week went on. The day of his first treatment, Ralph’s HBC was 8.4 and his platelets 11. He received a platelet TX that same day and a RBT TX (2units) the next.
He also has been dealing with very low neutrophil counts which are a concern. (.89 on Aug 4.) This is the area that has not responded well to the Dacogen.
I feel so frustrated trying to understand all the terms of MDS. Ralph is being treated within the UPMC Cancer Group and I feel his doctor is very good with knowledge of his diagnosis.
I’ve gained so much information from this forum…. and hope all the responses you are receiving are encouraging. Marla

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