Topic: MDS Remission

I am a three year + survivor of ICC.   However, last fall, my blood counts started dropping dramatically and fast.   I have posted about this under General Discussion, (I think that is where it was).  I was diagnosed with acquired MDS, which means I have a bone marrow failure caused by the Gem/Cis I did post resection in 2014.    And...of course, it is another rare cancer. 

I have been doing infusions of VIDAZA,  the only treatment available to me, for the MDS.  It is 5 days a week, and then three weeks off.  This has been since Dec 19th, 2016.   I was very ill for about 2 months and then the blood counts started to change for the better.

This last week, April 4th, I had a second bone marrow biopsy and the results I was given on Friday at Mayo showed that I am .....IN FULL REMISSION!!!   The chances of this happening, I also found out, were not the 50% as I had originally been told.  Because I have the acquired version of MDS, the chances of remission were only 15-18%.   YIKES!

I will not have to go back to Mayo or have another bone marrow biopsy until the MDS returns, which will eventually happened.  I was told yesterday, that could be in 3 months, ....or a year....or 2-3 years...or occasionally someone gets to 4 or 5 years.   However, my reading says that for people with the acquired version,  the VIDAZA often stops working much sooner. 

Right now, there are no other treatments available , so when the VIDAZA stops working, the only thing left will be a Hail Mary move.....a possible trial, though few of them will take me because of the underlying ICC.   

Meanwhile, I still have to go back to Mayo for my scans for ICC, the next of which will be May 5th.  I really need to not have a recurrence or met of the bile duct cancer as that would be a game changer.   

For now....I feel the best I have felt since last August, when all this MDS stuff started.....and today....I'm having the  5 year old grandson over for a play date with grammy.   smile.  Not living desperately.....just living.   

Julie

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.

Re: MDS Remission

Good fight Juile! Glad you are better. Your in my prayers.

Bob

Re: MDS Remission

Julie, YES, YES, YES, YES, YES, YES, YES, Yes      What else can I say? Our Miracle called Julie!!!!!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: MDS Remission

I am glad that you are feeling better compared to last August.  You take your great days and enjoy life.  I wish clinical trials would not be so strict and include patients who really need alternate treatments.  Take care of yourself daily with good nutrition, happy moments, and hope for other treatment options.

Re: MDS Remission

Julie....I am over the moon for you (and us.) 

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: MDS Remission

Julie that is awesome news!  So happy for you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: MDS Remission

So pleased to hear the good news!  You finally get a break! 
Big hugs,
Brigitte

Re: MDS Remission

Julie....you just know to make our day!!!!!!!

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: MDS Remission

Good morning All,
It's been awhile since I've gone on. Just a brief update...my husband dx last June 2016 with nonresectable intrahepatic  choliangiocarcinoma.  He initial had y90 on large tumor in right lobe and rfa on 4 small satellites on left lobe. July 28, 2016 started gem/cis every 14 days after flying out and talking to Dr Shroff at MD Anderson.  July 28 2017 petscan showed no light up, no Mets., no metabolic activity in large tumor!  He is up to 27 chemo treatments and his labs, although slightly out of normal range still decent. His afp is 10.0 upper end normal is 8.0  over the last year and recently on mri and cat scan he has had fairly good shrinkage of large tumor but still inoperable.
He still has good appetite  and although more tired first few days after chemo still functioning well, working. His interventional radiologist  last year had said he has 18 months from diagnosis. That would mean I lose him in February 2018. I pray he is wrong.  His foundation one mutations are IDH2 and a couple more that are really uncommon, no clinical trials on them. We know there are trials for IDH1 AND IDH2, I've talked with Agios.... I've talked to Lisa Crane and Melinda Bachini too, such kind helpful women. For them they were able to have surgery. I've read Middlesister  and her mom doing well, 3 years out and I believe Patty Cochran too, 6 years and no surgery, am I correct about her? 
We are just very grateful for the time, we are still exploring other treatments so that if and when gem/cis stops working we can prepare for a trial or other treatment. Thank you all for your encouraging words, updates and all the information avaliable through this site.

Re: MDS Remission

Dear Patti,

Although very hard to do, please try and look at Feb 2018 as possible party date to celebrate how wrong the doctor was.  We get scan results tomorrow for Mom, and we're almost at 4 years since diagnosis ( Oct 2013).  I had a hard time understanding the "size" of the tumor. They gave us measurements, but at least for Mom, it wasn't a nice symmetrical mass that was easy to measure.  And, even after the second Y90, there was tissue there, but all necrotic.  We are ok with dead tissue hanging out-  just because they can still measure it, does not mean it's viable.   She took oral chemo for 2 weeks after second Y90, but since then has not had chemo.  Are the smaller tumors still active?  If not are they considering letting him stop the chemo?

One note if you ever need a second IR opinion-  My Mom;s IR (Fred Moeslein) moved to FL-  he's now at Sarasota Memorial- 
he said to feel free to direct patients in his direction, and just as when Ihe was at Maryland he is willing to patient's records before I meeting to spare them a trip if he can't help.

Take care,
Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: MDS Remission

Patti,

It is good to hear from you, and that your husband has responded so well to treatment.  You are right to dismiss your radiologist's guesstimate regarding 18 months.  As you know from reading this board, there is huge variation among patient experiences so averages are not very predictive.  Also, my understanding is that the prognosis resets a bit -- in a favorable way -- for patients who have a good period of doing well under or after treatment.

(If you are interested in this last point, you can find articles by searching "Cholangiocarcinoma" and "conditional probability" - the articles mainly consider resection but the principle should hold for everyone.)

Keeping abreast of treatment options is very important with this cancer, as you point out. 

Please continue to keep us updated, this information is so helpful for other patients looking into treatment options.

Regards, Mary

Not a medical doctor!

Re: MDS Remission

Hello Middlesister (Catherine) and BGlass (Mary)
First of all thank you so much for your responses and encouraging comments, I know I sound wimpy but your comments brought tears welling up in my eyes of hopefulness. Not that I'm not hopeful but others who are going thru this like you all it is just so helpful the things you both said.
So, regarding the the small satellites that had RFA our interventional radiologist said they are dead. They show no activity and he has repeatedly said he feels they are completely dead, resolved. So, yes, I am wondering too about Scott on chemo continually. I know when Dr Shroff talked to us on the phone back in January/February she had said even about taking a cisplatin break....we did have authorization from insurance for consult last year with her but I don't think they will authorize again. You know this insurance stuff, it's an HMO thru the Healthcare system Scott works in as a director of echocardiography and he has a pretty good onc here but really, who knows how many choliongiocarcinoma patients he has had, I think sometimes they group pancreatic and bile duct patients together....even though may be adenocarcinoma still different. Anyway, I still want to pursue that in different directions as far as chemo continually every 14 days.
We have talked with our IR about a 2nd y90, he isn't against it but he said you can only get maybe 2 and he seems to want to hold off so that if he really needs it he can do another....but still will talk with him AND will definitely consider your Doc, Fred Moslein , we can even get to him easily from where we live in florida and share our images, reports. Also Mary, I read up on your suggestion very helpful....helped to keep all in perspective. One more thing UCLA doing SBRT trial for liver Mets and liver ca....going to talk to them to get more info.....
Thank you again for your excellent information.
Warm regards, patti

Re: MDS Remission

Dear Patti,

What a wonderful report on the PET scan!! NO metabolic reactivity! NO mets!! Now, to me that is a reason to celebrate! I propose that you and your husband make it to the annual Cholangiocarcinoma Foundation Conference in February 2018, and we will celebrate that the docs got it all wrong!!! All my best to you both! Love and hugs......Melinda

Re: MDS Remission

Dear Patti-

Although we were tempted to keeping attacking with chemo, once all the tumor was dead , the ONC said why do chemo-  how would she measure effectiveness if there was nothing to kill with it?  I am not a doc, but do know that chemo is not good stuff for the body, so I would definitely get a second opinion on if you should continue or save it for if anything comes back.
Dr. M was always there for us to reach out to and  the docs at MD would comment on that he was the best at reading the scans.  When our ONC ordered scans, I would email Dr. M and he would take a look rather just have us going on staff's reading.  I would highly recommend at least sending him your scans and asking him to read them- pretty sure he would do that without a "consult".  And, if you want to have me drop him a line first, let me know.  We get scan results for Mom today so I will be emailing him this evening to share the results.

Good luck,
Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.

Re: MDS Remission

Good afternoon to all,
Thank you all for your encouragement and positive sensible help. Got some more good news, Scott had MRI 8/10/2017, more shrinkage...still fairly large, 7.4 x4.9 but down from, 8.0 x 5.2 last scan in may and from last year when almost 12cm. Also " no definite tumor enhancement". Even my onc sent text expressing his happiness regarding our result. I just read Molly _may and those inappropriate doctors and their attitudes. We had one of those last year right after diagnosis  and we quickly replaced him. Also, my contribution too is to get the Foundation One testing....can be helpful now and down the road....but you go girl....keep on keeping on....
To Catherine, Middlesister, I pray your mom's biopsy is scar tissue and not reoccurence. But you are a super advocate and caregiver....you will do what has got to be done and fight with every tool that is available.
I am going to go ahead and reach out to Dr Moeslein  and send images....if you have a moment to give him a heads up that would be great but I will tell him we have talked via this site. Truly this community here is remarkable and I believe that not only are we are helping one another but all those professionals to keep looking, researching and fighting for a cure. Don't give up!
Gratefully, Patti

Re: MDS Remission

Patti-

I finally emailed Dr M today and mentioned that there may be a board member contacting him for a consult , but he said you hadn't contacted him yet ( but I said it would be Patti).  I hope he can help give you comfort about best way forward.

Best wishes-
Catherine

Not a medical Professional-  just someone who got caught up in this lousy disease.