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Esme,
I for sure would check with the doctors about what he taking that may be causing him to be depressed. Medicines can do good things and bad too. I will keep you both in my prayers.
Dee

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Hi friends, We are actually at the beach for a few days. The skies are blue and we just got up and are having our coffee. ha
Of course everytime we plan something I have to get something irritating. I got a canker sore and it turned into secondary infection so I’m taking medication but it doesn’t seem to be helping. My lower lip is swollen and I look funny and when I accidently bite it when trying to eat, doesn’t help matters.
Oh well I have to make the best of it. I’ve been juicing so much is why I think I ended up with the sore, even though I’m taking everything to prevent them.
Dee

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Hi Esme,
I’m sorry you and Hans are having so much stress. I think of you both often and pray for you and I also remember your advice to me at times. Don’t worry about your daughter because my two daughters acted like it was no big deal
when I had the lymphoma the first time, but they were both young and involved with their own things. When the lymphoma came back 3 yrs. later, they were totally different. They are so protective of me.
I am pretty much a positive person and laugh a lot and I know it helps my family. My mom who is 85 also laughs a lot and I still go to her for advice. She is full o wisdom.
Keep your chin up and give Hans a big hug.
Dee

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Patti, Thanks for the info on Vit. K. I will mention it to my doc. I just started the Amicar.
Thanks to everyone for your interest and advice.
I started juicing last week and am still taking the Essiac tea capsules, but the ones Janet is getting are stronger and cheaper than the ones I’ve been taking. I’ll prob. get them next time.
I always take them on an empty stomach BUT my bottle says to go off of them for a week. Does yours say that Janet?
I had a lot of loud rushing in my head this weekend. I went in for a blood test today and my HGB was only 7.8 and my platelets were still 2. I am going to get both red cells and platelets tomorrow. I have had some blood sores in my mouth from the low platelets. I was hoping the pineapple would have increased my platelets but know it’s too soon. At least they didn’t go any lower.
I’ll keep you all posted.
Dee

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Esme,
Thanks for the well wishes and I think you’re right about juicing being easier on the mouth. I just ate a couple of pieces and it seemed to be irritating but the juice isn’t. I sure hope the Thalidomide works too. If not, I don’t know what will happen. I don’t know of anyone who has been on it though, but heard it can help in a lot of cases. Thanks for the hugs.

Dee

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Patti, Thanks so much for the information. I will go ahead and increase my pineapple to 1 a day for awhile. I’ll have another blood test next Wed. and I’ll really be anxious to see if anything has changed. Yes, my platelets were only 2,000. I had a couple of mouth hemorraghes but they are gone. Yeah! Is your mom the one who also takes Esiak tea capsules? Mine say to take them for a month and then go off a week.
Dee

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Thanks to all of you for responding. I juiced my first 1/2 pineapple and it was delicious. I have some questions:
1. How long does it take to know if it’s helping? 2. Why juice it instead of just eating it? 3. Why does it raise platelets?

I’m starting AMICAR (Aminocaproic Acid) today since my platelets won’t go above 2-3. I guess it’s used to prevent or treat bleeding. It works to form clots.

Dee

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I still haven’t tried the pineapple but maybe since I’m taking L-lysine for my mouth sores, I won’t get any if I try the pineapple. What are the black seasame seeds for?

Dee

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Yes, Medicare pays but they won’t if the patient gives his own shot. Dee

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Lynette, unfortunately I’m allergic to Benadryl.
Had reaction to my platelets today. Itched all over. It was awul. They gave me a pill to stop it but i don’t remember the name. Dee

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Sarah, I’m so sorry about your Charlie. You are in my thoughts and prayers. Thanks for posting everyone. Dee

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Lynette & Patti, I just thought I’d check one more time if anyone else responded. You guys are all so great and caring. I’ve been feeling so up and down today and your responses have helped me think there might be something to help me. God bless you both.

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Hi everyone, I E-mailed Dr. Curtin, head of the MDS Dept. at OHSU. He was very sorry that the VIDAZA didn’t help me. He said if nothing happened after 4 cycles, that nothing is going to happen. He said REVLIMID is good for the red cells but is noted for lowering platelets which is my big problem. He wished he had more options for me. He said he’d be glad to talk with my doctor about my situation. Wish I had
some encouraging new. Dee

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Thanks everyone for responding to my delima about VIDAZA. I had to have more platelets today. Woke up with nose bleeding (count 3,000). My oncologist really doesn’t want to give my any more shots because I’ve done 4 cycles with no promising hints. We are going to do nothing for a week and then I’ll have another blood test to see where I’m at.
Haven’t decided on REVLIMID yet.

NEIL, No I’m not considering a 2nd SCT. I had so many problems the first time. I don’t think I could survive it.

SUZANNE, My chromosome report says all 20 metaphase cells are missing chromosome 7. Plus 3 cells had an interstital deletion of chromosome 5 long arm and 4 cells had both the chromosome 5 long arm deletion and deletion of
chromosome 12 short arm.

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Ben, I’m so so sorry about your wonderful mom. Please don’t hold in your emotions too long. We all need to share in our grief together.
God bless. Dee

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