[Christina]

Thank you for all of your information. My dad has decided to wait until after the holiday season to start the Dacogen again. I will keep you all posted. I think we can help each other with our experiences and I am very greatful for this forum, it is where I have turned during the past three years when I really needed help from the best! God bless all of you, enjoy every day…and stay positive!

Love,
christina

[Christina]

Lydia…another question. How often is your mom getting tx’s? My dad is getting them about every two weeks. We need to decide, supportive care or try different drugs. It’s a hard decision.

[Christina]

Thank you Lydia…I am really hoping others from the forum respond as to the amount they are taking.

[Christina]

Hi Angie…
I don’t see why they wouldn’t give your dad transfusions if his number is low. My dad gets them every 1 – 2 weeks. Yes…ask for irradiated, filtered blood. It helps lessen reation and iron overload. My dad also gets procrit shots once a week. I am not sure if it helps but it doesn’t hurt the situation. Let me know how his counts are.
Wishing you well!

[Christina]

Hi,

I am interested in having my dad try the pineapple juice and raw sesame seeds…anything is worth a shot. Juicing the pineapple seems easy but how do you eat the raw sesame seeds? My brother bought some and the directions said you have to cook/bake them – do you? Can you just have them off the spoon or add them to food? Any advise will help!

Thanks
Chris

[Christina]

anne,

What % match do they have for you? 9/10, 10/10?

Chris

[Christina]

Hi Simon,

I went to Fred Hutchenson a few months ago with my parents. My dad is RAEB-2 and they reccomend a transplant as well. I loved Hutchinson, however they wouldn’t work with my dad’s insurance. I think if we really fought it we could work it out. Sloan Kettering in NY already had the procedure approved. We decided to go with Hackensack University in NJ. Hackensack runs very similar to Seattle, the chief of the transplant team is from Hutch. I think the most important thing is how you feel about the facility. Follow your instincts! If you know you are visiting the top facilities ( and it seems you are ) follow your feelings. My father felt comfortable in his choice and I was relieved…can’t explain it I just knew that is were we should go. Good Luck!

[Christina]

I would like to share a story with all of you about Bill and Mary.

I met Bill and Mary on this forum 1 1/2 years ago.

When I learned I would be going to Seattle with my parents, this past May, to meet Doctors at Fred Hutchenson I emailed Bill and Mary to tell them.

They extended an invitation to us when we arrived and I took them up on the invite.

They were so kind and generous. Mary picked my parents and myself up at the hotel and drove us to the aprartment to meet Bill. It was an awesome experience for me…I really sat back and watched everyone and took it all in. Here were two men sharing their experiences with MDS, their lives may never have crossed if not for this horrible disease.

We spent two hours together and then Mary drove us home, first she gave us a tour past the hospital explaining where everything was for our visit the next day.

I will never forget Bill and Mary for their warmth, generosity and inspiration…they have forever touched my heart.

[Christina]

Hi,

I just returned from vacation and read all of your replies.

First I want to say “Thank you” for responding and sharing information. Although this is all very frustrating it helps to hear from all of you.

I do agree that it is better to take the neupogen rather than develop an infection but what upsets me is when the doctors claim there is no proof of the neupogen raising the count of blasts. Sometimes I feel like the doctors are withholding info. or are afraid to speak their minds. I get so many wishy washy answers from them. The doctors told us my father has 6 – 12 mos. until it progresses to the last stage.

Suzanne, I have been following you and you seemed to have done great on Zarnestra. Do you know if it is a closed trail?

To those of you who have heard that Neupogen will increase the blasts, where did you get that information? I am looking for it in writing or from a Doctor and can’t.

Once again, thanks to all who reply!!
Christina

[Christina]

Carrie,

Glad to hear your dad is doing well and especially in good spirits (that is the best medicine aroung!).
Hope all goes well with your moms surgery.
I am going to seattle with my dad this week to get a consult about a stem cell trans. we just finished vidaza and it didn’t work for us.
We all need to hang in and support one another! You are doing a great job…good luck 6/18.

[Christina]

Dear Lola,

That is great! Seattle is THE place to go. I am going this week with my parents to beging the process – it will be our first consult. I hope we are as lucky as you and find a match with his siblings. Keep us posted…you are on your way to a cure!

[Christina]

Lola,
What is the difference between a bone marrow transplant and a stem cell transplant? Is it just the level of chemo? I am traveling this Sunday with my mom and dad to Seattle – Fred Hutchinson Cancer Center to discuss a Stem Cell trans. I am very hopeful, it looks promising!

[Christina]

Many thanks for all of your responces. I am taking them all into consideration as I write my questions tonight for my dad’s visit to the hemotologist tomorrow. This just feels like a bad dream…but things could work out just fine. We have to believe…right?! You are all in my thoughts and prayers…we will beat this…all of us! Christina

[Christina]

Hi Juliemarie,

My dad has MDS/RARS and I have often asked the same question which is, what is the answer to the question “how is your dad?” I usually say he’s hanging in there! Or that he is lucky to be able to go to work and enjoy the day. When he is in the hospital I will go into greater detail. But mostly it is for my mind to talk to people about it. You need to get your feelings off your chest, this is hard on you too. Ask your mom what she would like the family to know, and keep it light. Just by mentioning the fact that she is on chemo should be enough said. Good luck.

[Christina]

Thank you for your replies. Dave have a great trip, relax and enjoy yourselves!
Eve, you are right…I will check with the docs.

[Author]

Posts