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MDS Myelodysplastic syndromes

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  #1  
Old Thu Aug 16, 2012, 11:41 PM
milliken2 milliken2 is offline
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Location: Ellwood City, PA. U.S.A.
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Switching to Vidaza next week

Hi Everyone;

Well - Earl went for his blood draw this AM - and his Hgb was down to 7.9, They had trouble withdrawing blood from his mediport, so they had to do a peripheral stick - but did finally get it. Tomorrow we have to be there at 9:00 AM to get Activase in the mediport, wait for 30 minutes to see if it works - and if it doesn't work then - you wait another 90 minutes. This all has to happen before he gets the 2 units of blood, the desferal, and the platelets.

Then we went for the appointment with the hema/onc. Prior to the appointment, I had talked to my friend at the lab, and they said Earl's Hgb was down to 7.9. Mind you - last Friday and this past Tuesday he got 2 units of blood and one large bag of platelets each time. So - this will make 6 units of blood in an 8 day stretch. Earl and I talked, and he hasn't had one good week since he started on the Dacogen. He was due to begin round six next week, Since I already knew what his numbers were before the Doc came in - I was prepared. Earl said "You tell him" - and I did. I said that we thought that the Dacogen was not working, and that we did not want to continue. He looked at the past labs, and said "I agree." much to my surprise. Then he suggested we try Vidaza - I left that decision up to Earl, and he agreed to start the Vidaza next Monday - 5 days on then 3 weeks off - and then repeat the cycle. I asked the Dr. about giving it to him sub-Q, and he said "No, No - not in his case." I then said that I thought the absorption might be better since it is not going directly into the vein and quickly kiling off what good blood he has. He again said no, but ordered him a Neupogen injection (the first one he has had). So - we went back to the infusion lab for the injection, and while we were waiting - the hema/onc came in - in front of all the patients and nurses "I am going to change your Vidaza to Sub-Q injection, as I feel it has better absorption and stays in the body longer." He then turned on his heel and walked out. HMMMM - didn't I just say that to him in the exam room when no one else was present?

Then, this AM before we left - the cardiologist's office called here and wanted to schedule an appointment. Said we were going to see Dr. Sim Yuk So(?sp) - the Physician's Assistant. To which I promptly replied - No - we are not. I want the appointment with Dr. Paul Wayczynski and only Dr. Paul. The receptionist said "Oh - you know Dr. Paul" And I said yes. I did not tell her that not only do I know him professionally from being in the hospital - when I was working Hospice years ago, I took care of his Mother. Paul and I are on a first name basis, and he will be honest with me - I still don't think Earl has a heart murmur, and I will NOT see the PA we saw yesterday again for sure.

It seems like we have been living at the Dr's offices, and the hospital. This house is showing my lack of attention, but when I get home with him, I am worn out too.

Hoping that everyone improves - and know my MDS 'family' is always in my thoughts and prayers.

((((HUGS))))

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #2  
Old Fri Aug 17, 2012, 02:50 AM
maria&lola maria&lola is offline
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Good for you, good for Earl. Praying for better results with the Vidaza. You both have another long day ahead--hope he's feeling stronger after the transfusions.
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  #3  
Old Fri Aug 17, 2012, 04:56 AM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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Vidaza

Hi Beth,
Like Maria (and everybody else) I hope Earl will respond to Vidaza! I don't really think sc Vidaza works better than iv but different studies report different results. Remember to use primrose oil (gently) if Earl is having skin problems after the injections.
Kind regards
Birgitta-A
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  #4  
Old Fri Aug 17, 2012, 09:07 AM
Sally C Sally C is offline
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Dear Beth,
You know we are all pulling for you. And Earl is so fortunate to have such a knowledgeable wife and patient advocate.
Take care of yourself!
God Bless,
Sally
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  #5  
Old Fri Aug 17, 2012, 09:14 AM
donna j. donna j. is offline
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Dear Beth,

My experience with sc Vidaza was: shots in the belly were essentially painless during administration and bruising/ irritation afterwards was less as opposed to my initial upper arms and thigh injections. I guess less muscle and more fat. Good luck, you are in my thoughts and prayers.

Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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  #6  
Old Fri Aug 17, 2012, 11:44 AM
Lbrown Lbrown is offline
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Beth,

Good luck with the vidaza and good for you for sticking up for Earl.

Deb
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  #7  
Old Fri Aug 17, 2012, 12:42 PM
rkp rkp is offline
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Beth,
Good Luck to Earl with the Vidaza treatment.Praying that it gives good results.
-RP
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RP, Daughter of SK age 66, diagnosed MDS July 2012
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  #8  
Old Fri Aug 17, 2012, 06:04 PM
milliken2 milliken2 is offline
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Thanks for the words of encouragement

Maria & Lola; Briggita; Sally, Donna, Deb & RP;

Thank you all so much for the words of encouragement. We got home - Earl ate a few bites - then he was off to bed - he's just exhausted after these long days.

I tried to call the hema/onc we were seeing when we were in Florida - just to bounce a few things off him - and he seems to be side stepping me. First the triage nurse called, then his PA, and like I told them both - I am not looking for answers - but since I am getting less and less impressed with the hema/onc we have - I wanted to be more informed when we went in next week, because, he will see the Dr. again during treatment week, and I want to talk to the Dr.

Again - Thank You Dear Friends - you mean more than I can ever tell you.

((((HUGS))))

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #9  
Old Fri Aug 17, 2012, 06:20 PM
PattiDean PattiDean is offline
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Good evening Beth,

Want to wish you and Earl good luck with his Vidaza treatment. Also, I love the way you stand up for Earl.

Dean and I are going to be seeing another oncologist next week. The oncologist that Dean sees now is caring and compassionate, but he doesn't give either of us information, he doesn't answer any questions or concerns, just tells us to trust him. Granted Dean is doing well right now, but I still want answers when we are not sure of something. I do hope we are doing the right thing.

I was able to get Dean's BMB on Tuesday, but the doctor just gave us the copy and would not go over the results.

I need you here, Beth.

You will both be in our thoughts and prayers as Earl begins his Vidaza treatment.

(((HUGS)))

Patti
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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  #10  
Old Fri Aug 17, 2012, 11:05 PM
milliken2 milliken2 is offline
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Patti;

We have been wintering over in the Spring Hill/Brooksville area of Florida for the last 6 years or so. Had a wonderful house last year, but the landlord pulled a fast one, and said we left the house infested with fleas. Like I told him - we had a 2 day drive home, and not one flea was in the caravan, nor did we come home to any fleas. But he still kept our $700.00 security deposit, and never did email me the receipts for the supposed flea removal, even though I asked him to. Too, like I told him - we had Hannah at the Vet's just before we left, and he didn't see any fleas - and she ALWAYS gets her Frontline Plus put on her regularly.

We like the area, and have friends there - and have been looking for a house to buy - but need to be there to really look at anything. But - I am always here for you - email me, or send me a PM and I will return it with the phone numbers so that I can really try to help you.

Thanks for the well wishes for Earl - I will always be his advocate. But I know a lot of the docs - especially the ones from India - don't like women asking questions or sometimes knowing more than they do. Like I told the PA we saw the other day - I am interviewing you at the same time you are talking to me - and when we left, I made it VERY clear that I did not want to see her again. She didn't even know how to pronounce Dacogen or Arixtra correctly - and I am supposed to put Earl's life in her hands - I think NOT.

(((HUGS))))
Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #11  
Old Sat Aug 18, 2012, 12:14 PM
PattiDean PattiDean is offline
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Hi Beth,

I can't believe what happened to you with the rental home. I have a dog, Pebbles, and I know that if a dog is infested with fleas, you would know it! They are all over the dog. We give our dog a monthly flea treatment. Our vet keeps telling us that all dogs in Florida have fleas. Ha, ha, everytime we visit this vet he runs a flea comb over her body and never once has he found a flea.

We did stay in a hotel once on our travels, in a pet room, and the next morning Pebbles was itching like crazy. I rolled her over and there were hundreds of fleas on her body. Scared me to death to see that many. We threw her in the tub and kept washing her, saw fleas jumping left and right. We couldn't get out of that room and hotel fast enough.

Dean and I live in a retirement community, we moved to Clearwater a year ago from the Orlando area and enjoy being so close to the gulf.

I wish I was able to speak up, I ask questions, but am not very good at speaking up when I disagree with a situation. Dean's oncologist is from Mexico, he seems to be caring and compassionate, but doesn't give information or like to answer our questions, just keeps saying "trust me", and I don't like that.

Dean's cardiologist gave us the name of an oncologist and we are making an appointment on Monday. Dean is nervous about going to someone new and probably starting all over again, but he also does not like the fact that his current oncologist doesn't answer our questions or concerns. Hopefully this new oncologist will be different. I guess, like you say, we will be interviewing him.

I will email you right after I submit this post.

Keeping you and Earl in our prayers.

(HUG)

Patti
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Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
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