[Sandy L]

Hi Diner

Sorry to hear that you are not doing so well. I do hope that tomorrow is a better day – hang in there. Were you given the shot in the thigh? Is that the reaason for the pain in the leg?

Mike will be finishing his last shot for this month tomorrow. He too is getting tx and platelets. They might have to do platelets again tomorrow. His doctor is also concerned that he might be bleeding , but he took a stool culture and so far no internal bleeding. After the first day with the bad reaction (nausea and vomiting) they gave him a lot of anti-nausea drugs and they are working. This morning we headed to the dentist and he needed a root canal. He tolerated it well and stopped bleeding quickly even though his platelets are 15.
Thank you everyone about the tip on Rincinol. I will buy it tomorrow. He is still in such pain from the tooth even after the drainage. The dentist said that he has seen many people that after chemo have very decayed gums. The dryness in the mouth is the reason he gave. Mike has been exceptionally thirtsy and drinks continuously for at least a month now. He only started the Vidaza 6 days ago and that infection appeared at least 5 days ago. Can it cause so much havoc in only one day? We will go back tomorrow to see what they say. He is popping Percocet every two hours.
The injestion sites from the Vidaza are red but he is not sore or tender. He did say that he is getting a lttle light headed and is having trouble concentrating. ( Like adding up a row of numbers) He also said that while sitting on the couch his eyes would close (while he is sitting up) and then he thinks he cat-napped and awakes startled. Has anyone experienced anything like this?

[Sandy L]

Eve

Thank you for clarifing that for me. I did not know why they had to cross match every third day.

[Sandy L]

Sarah

I will be looking for your posts. Good luck on Wed. and be sure that I will be praying for you.
Good Luck

[Sandy L]

Decitabine is still an investigational drug. It is only in Phase 2 – Clinical Trial. It still has a long way to go.

[Sandy L]

Good luck Randall

We will be pulling for you.

[Sandy L]

Hi Diner and Terri,

Thank you so much for your good wishes. Mike had his shot Fri, San and Sunday and with plently or nausea medicine he is now okay. The plates went down to 15 so he had platelets today in the hospital. We were there from 12 to 7 PM. The blood comes from WPB and they had to type him again. Does he have to get typed everytime? Can’t he carry a card? Anyway they now want him to have another tx tomorrow, but the doctor wants to see him in the office before then. He RBC is down to 7.6 – All his numbers are way down. He is tolerating the shots very well. He had both arms and both sides of the stomach. The site are is red and bruised but he has no discomfort. The bad thing is he has a terrible infection in his mouth. Right side upper gum area. He is taking pain killers every two hours and says the [ain is unbearable. After the docotr, and hospital we will try to go to the dentist.

Where do you buy arnica gel? and Bromelain supplements.?

Diner good luck on your last shot. And Terri how is Bob’s counts? Are they going up?

[Sandy L]

Hi Terri,

Mike’s doctor said they called Celegene and they said it would not be approved by Oct 6. He has to start Vidaza yesterday and the first treatment did not go as well as we hoped. The nausea and vomiting that night was terrible. Today he had another shot and they gave him a anti-nausea drug intervenously and so far so good. His numbers are very low and he will need platelets on Sunday with the Vidaza shot at the hospital. I too agree that you are very lucky with a very good doctor. I do think we have found someone who is competant and caring and we will be sticking with this one. My suggestion to anyone who is not happy is keep trying………..
Sometimes when you call and speak to receptionist they do not even know the term MDS. Ask to speak to the Office Manager and then go into detail and ask all your questions. The girls at the front desk are not the ones that you want to speak to.

My son is coming in tomorrow. We are looking forward to the visit. If you have a chance I would love to speak to you. Hope Bob’s last test came back with goo numbers.

[Sandy L]

Hi Fran,
I know exactly what you are going through. I hope you get some positive advice at the support group. Isn’t you husband on medicare? Do they limit where you can go for treatment? I do not know much about it except that I too envy all the members of this list that can go to a center of excellence for the best treatment. We have to pray that he gives us many years with our spouses and that the doctors that we are using can give us the time we so desire. I will be looking for more posts from you. Good luck

[Sandy L]

Hi Sarah,

I hope he starts to feel better soon. Here’s hoping that the tx works.

[Sandy L]

Carrie,

Thinking about you and look forward to your posts. Your strength supports us all.

[Sandy L]

So sorry for your loss. Myheart goes out to you.

[Sandy L]

Thank you everyone for your responses. Mike was told that he had abnormalties with the 5 chromosome but not deleted. We went to the doctor again today. When he woke up he was having difficulty – no energy – could not walk the dog to the corner – so I made him stay home and go to the doctor. I thought they would give him a transfusion but they gave him another shot of Procrit 60,000 . – even though they gave him 40,000 on Friday. The doctor wants him to come in on Monday for another shot. How many shots can you get and ver what periord of time? Still scheduled for the BMB on Friday. My daughter and my two grandsons are coming for a short visit on Thurs. That will be the best medicine.

Margot1 -I never heard of traila – I will do some research but do you think that would be better than waiting for the Revlimid? Why is he ruled out because of age. Do you have an insurance issue ? I thought there were some place that took you till the age of 70.

Carl – Are you waiting for Revlimid also?

Terri – How is Bob?

JulieMarie – Good luck on you appointment tomorrow. Let us know how you make out.

Suzanne – Thank you for that information. I did not know how the system works.

[Sandy L]

Mike will be staring Vidaza shortly. What severe reactions are you experiencing? Terri will probably respond to you since Bon had been on Vidaza for some time.

Keep us posted. Good luck

[Sandy L]

Carrie

So sorry to hear about your Dad. My prayers are with you.

[Sandy L]

Di and Scott
I will be praying for you. I think we are going to be in crisis soon so I know the feeling (scared) . I was always under the impression that in order for it to be AML you needed blasts over 20%. What form of Chem were they giving him? Any chance for a BMT? I am new to this – so I hope some of the other members answer some of your questions. Hang in there.

xoxoxo

[Author]

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