[Kathryn]

Hi Caroline, my father never vomited, but his stomach was constantly nauseated. He felt like it was due to his CMML…He had such a difficult time w/ food… Seems the only thing that actually tasted good to him was sweets … Sherbert seemed to be the easiest to stomach.

Also, my 2 cents worth…. Please don’t let your dad keep info. from his doc.. Letting his doc. know exactly how he is feeling or what he is experiencing will enable the doc. to better treat him and keep it from becoming a possible crisis.

Best wishes to you and your dad… Please keep us posted.

Kathryn

[Kathryn]

Esme, I have been thinking about you and Hans a lot recently. I was glad to see your post. I’m so sorry that things have been so challenging & frustrating. I hope that things continue to brighten for you both and there’s good news from the doc. next week!!! You’re in my prayers.

Sending you positive thoughts, hugs & love,

Kathryn

[Kathryn]

Hey Di & Scott,

With Faith there is Hope… Keep the Faith & keep the positive thoughts in the forefront. Though it is not a cure all, it definitely does help. You both are in my prayers.

With love,

Kathryn

[Kathryn]

Sarah, just wanted to wish you my best for a safe & successful trip. I hope that every day is better than the last for Charlie.

Love,

Kathryn

[Kathryn]

Hi Dee,

My father’s platelets got really low many times, but he was never hospitalized. He did need tx. frequently. With yours being so low, I believe the pounding heart goes along w/ it.

Like the others said, don’t wait to check on something when it doesn’t feel right. Don’t wait for a crisis. It is much better to safe than sorry. Your doctor is there for you. The anxiety from not knowing isn’t good for you either… The knowledge/understanding can bring peace of mind.

With best wishes & hugs,

Kathryn

[Kathryn]

Hey, the MDS-Foundation may also offer something like this, but I know that the Leukemia-Lymphoma Society will reimburse $500 per year to you toward treatment, etc.. My father rec’d. a check from them personally. Also, the American Cancer Society has avenues to get financial aid, if you need.

I will keep you in my prayers and I am wishing the best for you. Keep the faith and hang in there!

Kathryn

[Kathryn]

Sarah, my father had diverticulitis. His went undiagnosed and he developed an abcess. I am so glad that Charilie’s was caught early enough to put him on antibiotics.

I hope he is feeling better and gets his strength back soon. He’s been through a lot so it probably just takes a little longer.

I’m sending you both my best wishes and prayers.

Kathryn

[Kathryn]

Sandy, I am thinking about you guys & keeping you both in my prayers. I hope Mike gets some relief soon.

Kathryn

[Kathryn]

Sarah, I am glad to know that all went well w/ Charlie’s surgery. I know someone whose mother had her spleen removed and it made quite a positive difference for her. I am wishing the best for Charlie.

Best of luck for your trip to Minnesota.

Take good care & hang in there!

Kathryn

[Kathryn]

Frank,

I am so glad that things are going well for you and that your trip to China went smoothly. I know it must bring you such peace to know that your girls are being well cared for by your family. I hope it won’t be long till you are able to see them again.

Take good care and keep us posted on how you are doing.

Sending you my best wishes,

Kathryn

[Kathryn]

Carrie, it is a grieving process & it has many phases. The beginning seems so surreal…as if they are on a long holiday…. From there it has its own way and its own time for each of us.

As always, I am sending you love & best wishes,

Kat.

[Kathryn]

Sigit, I am so sorry for your loss… What a beautiful name she has. My prayers are with you and your family and I am wishing you all peace in your hearts.

Kathryn

[Kathryn]

Hey Sarah, my father was previously given lasix when given the red blood, but for some reason it was not ordered one time while he was in ICU. Even though the nurse kind of questioned it, she gave him the blood anyway w/out it and he retained so much fluid… It was not pleasant. As soon as she got the lasix in him the swelling & fluid went down.

Best wishes to you and Charlie,

Kat.

[Kathryn]

Hey Diner, as JimBob said, the more educated you are the better decisions you can make regarding your care. Definitely ask questions… to anyone & everyone.

My dad’s leukemia began to progress quickly and the doctor felt that the Vidaza wasn’t as effective as needed so he was switched to Trisenox. The “heavy duty” chemo wasn’t an option as they felt he wouldn’t be able to handle it. From what I have been told, Trisenox is used on older patients when there are no other medicinal alternatives. The doctor did comment that while in the two weeks he was on Trisenox, he was possibly having residual effects from the Vidaza…. It was working, but just not well enough….

My father & his wife weren’t big question askers, nor do I feel my dad was upfront w/ how he was feeling….. they just followed the doctor’s orders, and his children were not allowed to advocate for him. I feel not being completely proactive was a critical mistake. Along w/ asking questions, please always let the doc. know how you are feeling… You can’t assume they know…. The more they know, just like you, the better they can care for you.

Diner, you are in my prayers. I hope that everything goes well for you and that Vidaza is a successful option for you. Take care and please keep us posted on how you are doing.

With best wishes,

Kathryn

[Kathryn]

Hi LuAnn,

My father took Vidaza for two rounds. The fist round was extremely hard on him, especially around the 14th day. He was very determined though and kept moving… dressing in the a.m., walking around the house, 2lb. weights in his hands excercising his arms while he sat… Honestly, I don’t know how he did it feeling as drained as he was and with his legs being so extremely weak. He also rec’d. the anti-nausea meds. along with it that helped. The second round was much easier on him. I think part of that was because he was stronger that time around.

If you have any questions, please feel free to ask.

Kathryn

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