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MDS Myelodysplastic syndromes

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  #1  
Old Mon Sep 21, 2015, 06:49 PM
SASSI07855 SASSI07855 is offline
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Location: Perry, Georgia
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Changing Cancer Treatment Provider

I have been going to a local Cancer Treatment facility for a year now for MDS. It has gotten to where I never see the same doctor or PA when I go to my monthly Vidaza sessions. In fact I have not seen a doctor since July, nor have I had any Vidaza shots since July. This provider says that since my platelet count is less than 100 they will not give me Vidaza until my count gets back to at least 100. When I started Vidaza in September 2014 my platelet count was about what it is now (61) and this did not stop them from giving Vidaza back then. This provider only gives Vidaza for a period of 5 days once a month not the recommended 7 days of Vidaza shots that other providers recommends.

Today I went and got a second opinion from another Cancer Center. This provider is 22 miles from where I live versus the 4 miles distance that I am now traveling. The doctor I saw today spent 70 minutes with me and my wife discussing MDS and my case. They give Vidaza for 7 days straight every six weeks. It would mean that I would have to go to the hospital across the road from this providers office for Vidaza shots on days 6 and 7 which would be Saturday and Sunday.

Has anyone else been faced with a situation similar, or had to make a decision like this? Your thoughts and comments would be appreciated.
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  #2  
Old Mon Sep 21, 2015, 07:08 PM
Neil Cuadra Neil Cuadra is offline
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Getting the full attention of a doctor who studies your specific case, rather than adhering to formulas, sounds like a big advantage to me. I'd be worried about getting Vidaza without more thorough monitoring, and about not being on the recommended treatment schedule.

Having a different arrangement for Saturdays and Sundays isn't unusual, and I'd prefer that to not getting the treatment at all those days.

You're asking for opinions. Mine is that the second center offers you a better choice, assuming the doctors there are just as familiar with MDS.

My family lives near a major treatment center, but we choose another center an hour away for my wife's treatment because we knew that she would get the best care there, where we could partner with doctors and have all of our questions answered. We've never regretted choosing the best care over the most convenient treatment center location.
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  #3  
Old Mon Sep 21, 2015, 07:24 PM
bailie bailie is offline
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I think you should change providers. I get five days of Vidaza at my local cancer center and then two days at a larger facility (Oregon Health Science University) on the weekends and then have a 21 day break. It seems strange that your facilities can't/don't work together. There could be a reason why they didn't want to give you the full dose of Vidaza. That reason could very easily be the low platelet count. What did they say when you asked them why you weren't getting the full dose, or why you haven't seen a doctor? Is there any problem with insurance?
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #4  
Old Mon Sep 21, 2015, 09:05 PM
traceyn11 traceyn11 is offline
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The two times I got Vidaza, I had it M-F and then skipped Sat/Sun and had it Mon/Tues again, then off for 21 days. The infusion center wasn't open on the weekends. I spoke to my oncologist about this before I started and he assured me the schedule was fine. Not sure if that would work for you.
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #5  
Old Tue Sep 22, 2015, 07:26 PM
Faye R Faye R is offline
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Smile

We were told that it is better for Vidaza to be given 7 days straight, however if the treatment centre is closed on the weekend then 5days + 2days then 21 days break. Your blood counts are taken 2 days before the next treatment it is then that they decide on what to do next, toxicity is what they are concern about, that is what has happen to me.
I would go with who ever you are comfortable with, trust is a very big thing in my opinion.
DXRCMD NOW DXRAEB-2
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  #6  
Old Wed Sep 23, 2015, 01:37 PM
PaulS PaulS is offline
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I think the most important thing is to find a doctor you trust and feel comfortable with at an MDS Center of Excellence and not just a local cancer center - don't know where you are but finding a person experienced with MDS is critical. Someone who is not just following a standard protocol but who knows when that protocol may or may not be working, and what else is availably, when to consider transplant, other less conventional drugs - clinical trials and is up on the latest research.
I would travel a couple of hours to my hematologist and was able to arrange for vidaza shots and transfusions locally - but my primary hematologist made all the decisions. She helped me find a local hematologist who would write orders my doctor wanted -He was happy to work with a doctor of some renown and happy to help a sick patient.

Your Local Center won't be doing a transplant if you need one - another reason to look to find doctor at major MDS Center and figure out a way to reduce time traveling - by corresponding and coordinating treatment via phone or email. Its more work but work it in the long term. Good luck
P
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #7  
Old Wed Sep 23, 2015, 08:22 PM
SASSI07855 SASSI07855 is offline
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I want to thank all of you who responded, and for the insightful information you posted.

Sometimes things happen in strange ways. I went To the Cancer Center I have dealt with for a year now for a scheduled appointment on Tuesday afternoon (September 22nd). I saw my fourth PA in my last four visits. I took with me a document that I had composed, listing my issues and concerns. I gave this document to the PA. It spelled out all of my issues. I was ready to drop the cancer center and my current cancer doctor. This PA seemed to actually care. She saw that I meant business. I left her and went and got blood work done. I then went back to see her again to discuss the results of the blood work. While I was gone she called my cancer doctor and talked to him about my issues regarding the Vidaza frequency of use, and the other things that I had listed.

I got their attention! The PA set me up for a 30 minute appointment with my cancer doctor for Monday September 28th. As I was pulling into the front yard where I live my cell phone started to ring. It was my cancer doctor calling me. He said that he had talked to the cancer doctor from Emory University Hospital that I mentioned in my document that I had left with the PA. My cancer doctor told me that him and the cancer doctor from Emory University Hospital were in agreement, based upon my blood work results to change me over to Dacogen from Vidaza. My cancer doctor also said that he had a call in to talk to the cancer doctor that I saw on Monday September 21st. This change requires me to have a port. Dacogen is administered IV and not by shots like Vidaza.

Right after the call from my cancer doctor I got a call from a person at the Houston (we pronounce it House Ton) Medical Center in Warner Robins, Georgia, wanting to set me up for an appointment for a port installation this Thursday morning (September 24th). I go back next Monday afternoon, September 28th to the Cancer Center to see my cancer doctor, and to begin the Dacogen infusion.

I really did not want to drop the Cancer Center, but I had had it with them. It is so convenient for me. Four miles from where we live. It takes me 14 minutes to get there, using back roads. The parking lot is easy to get in and out of, and is within 50 feet of the cancer centers main entrance. The building itself is large and open with lots of glass walls, and the air smells fresh.
I am glad that I got their attention. Dacogen and Vidaza are cousins as I understand it, but do some different things. Vidaza was beginning to not work for me, so maybe all of this will work out for the better. I am happy that my cancer doctor was willing to reach out to the cancer doctor at Emory University Hospital in Atlanta, and to the other cancer doctor that I went to see, and was willing to discuss my case with them.
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  #8  
Old Thu Sep 24, 2015, 12:55 AM
Cheryl C Cheryl C is offline
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Wonderful news! I can sense the relief in your post. What you did was advocate for yourself and sometimes that takes courage. Well done! All the best on the new regime.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #9  
Old Thu Sep 24, 2015, 12:31 PM
Neil Cuadra Neil Cuadra is offline
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Great news about getting the attention you deserve, SASSI07855!

When the Aplastic Anemia & MDS Foundation talks about Standing Up for your Health, one of their information campaigns, you should be their featured patient!
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  #10  
Old Thu Sep 24, 2015, 12:53 PM
PaulS PaulS is offline
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That's great - your doctor having a connection at Emory also sounds good - you may want to consult with him/her directly at some point and your doctor should be happy to make a referral. You may require treatment there at some point.

Your doctor should be easy to communicate with, smart enough to know when he doesn't know something, confident enough to ask more experienced colleagues for advice - I have some of the best doctors in the world and they routinely ask their colleagues about my case and work easily with others - that's what good doctors do - if you doctor thinks he/she knows the best treatment and doesn't need to talk to anyone else he/she knows nothing. This is a complicated illness with many approaches which may be right or wrong and the best doctors will ask others for advice - ultimately you will need to rely on their experience and need to trust them. Glad you are getting better attention.

Vidaza and Dacogen are pretty similar - convenience is as important a consideration any other - probably more so. Good luck and glad you are making progress - Best Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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