Topic: Chemo caused MDS: Update

It's been a while since I have posted following being diagnosed with MDS (Myleodysplatic Syndrome) last fall.   MDS was caused by the chemo, Gem/Cis, I did after my 2014 resection apparently damaging my bone marrow.  MDS is basically a cancer of the bone marrow that causes bone marrow failure.  Blood counts drop precipitiously as mine did, very, very fast.   

After a bone marrow biopsy late in 2016, they found that I had four gene mutations in my bone marrow, which isn't good.  The more mutations, the worse the prognosis.  I was given the diagnosis of high risk MDS, which means that I am at high risk of the MDS progressing to AML (Acute Myeloid Leukemia) with a median survival time of 6-24 months.  That was a total shock.

The only treatment available to me was one of two drugs, which are basically the same thing, so if one doesn't work, the other probably won't either.  The only cure is a bone marrow transplant, but due to the underlying intrahepatic bile duct cancer (currently no evidence of disease) I don't qualify for and don't qualify for any clinical trials either for the same reason. 

So, in December, the week of Christmas, I started getting infusions of the drug, VIDAZA, with a 50% chance of it working well enough, or at all, to get a partial or hopefully full remission.  It can often take 6 months of the drug before it starts working, if it does.

My blood counts by January were getting scary.  Platelets went down to 11K and hemoglobin was hovering around 6.2-6.8 until they'd give me a a red cell transfusion.  (I had issues with my local oncologist about the timing of the transfusions and eventually had to fire her and change to another oncologist in another group in town).  My white blood cells were remarkable in the middle of normal range, BUT, I was reminded often that the bone marrow biopsy had shown that at least half of them were abnormally shaped and thus probably not functioning well.  Eventually, even the white cells dropped from mid 5-6 down to 1.6.  A week later they came back up to 4.19, so they may be stabilizing and improving.  Hemoglobin is now 11.4, with the last transfusion being almost 4 weeks ago.  I was given a procrit shot to help the bone marrow make red blood cells 4 weeks ago but did not require another one two weeks later and may not need one next Monday either when I go for the next infusion week.  Platelets....oh those lovely platelets.  At the end of January, there was suddenly a sign (to me anyway) that they were slightly increasing again and by Jan 27th, they were at 25K.  They dropped back again to 17k....but a week later.....BOOM.....they skyrocketed to 161K.  The doctor even requested that the lab rerun the test immediately....with results coming back as the same..   Everyone was all smiles!   smile   

This week, the platelets were 209K.....solidly into the normal range.  My doctor, who I am really liking, said that I looked like a totally different person than when he first met me in January.  I FEEL like a totally different person. 

The VIDAZA is not a cure.....at best it can only give a full remission, which will eventually end.  At that point, I will have limited treatment choices.    Chemo will not work because chemo is what caused this mess.  My possible options right now at that point would be to do a DNA analysis of my bone marrow to check for mutations and then see if there is a drug we could use off label (out of pocket costs).   Right now, it "appears" that the VIDAZA may be working for me.....at least the local onc said yes to that question.   It can all change in a heartbeat and stop working again.  But, for now, I feel the best I've felt in about 6 months and am taking advantage of that to do more things.  I've felt so physically and emotionally down for so long though, that everything is an effort and takes a toll.  I cooked dinner by myself yesterday (for 7 people) and today, I slept 5 and a half hours during the day after a full night's sleep.  But, I have energy that I haven't had in months and am enjoying life as much as possible.....esp time with the little grandsons. 

So, that's where I am.  The bile duct cancer may come back again and if it does, it's going to really complicate things because I can't do most chemo, so will pray that if it does return it is still in the liver and operable again.  So far....NED.   Need to keep it that way and hope the MDS remission is real and lasts a long time and I exceed their expectations. 

MDS is another rare disease/cancer and affects small children to oldsters.  There are a smaller number who get this already rare disease from cancer treatments (chemo and radiation). 

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: Chemo caused MDS: Update

Wonderful news, Julie!  It's so very nice to hear from you.  Sending loads of positive thoughts for continued healing.

Debbie

Re: Chemo caused MDS: Update

Thank you , Deb.   The last 6 months have been a nightmare, worse than when I was diagnosed with ICC, and to think part of the treatment for the ICC post resection caused all of this.  I'm hoping to be back on the boards more often again as time goes forward now that I feel better.   My time is divided though between these boards and the MDS boards now.  I'm kind of in a minority over there as well, so .....like I don't really belong because there is no treatment for me past what I'm doing.  I'm kind of the "cousin nobody wants to play with."  sad   But, I still learn some things there at the MDS site and watch for new things.  They have to really speed them up in trials though or I won't get a chance to use any of them.

Meanwhile.....enjoying those two little grandsons so much and fielding such questions from the 5 year old as, "Grammy, if I died and went to heaven, would I come back to earth as another baby?" or "So, how does heaven work?".  It actually got a LOT deeper than that.  That child is an "old soul!"   But, I feel good that he is comfortable to ask me.....just glad the lights were dimmed before bed not to see my tears. 

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: Chemo caused MDS: Update

Julie......sorry for the late reply.   I too am thrilled to hear that things have settled down for you.  I openly admit,  I checked with Lainy (behind the scene) to make sure you are communicating with someone. 

When you have time and feel up to it, please know that we miss your postings.  I realize it's a bit selfish on this end, but the reality is you are greatly missed on this site.


Again, the news is wonderful and continued success is what we wish for

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: Chemo caused MDS: Update

Julie you already know how excited I am with your good post today. I want to tell everyone what a hero you are and when I feel low I just think of you and what you have been through and how much you are sounding like my new JuJu again!  What we need is for this "break" to last long enough for that new idea or new treatment to appear. choices are the best.
Your Grandsons are the most special little men I know and you are lucky to have a most wonderful husband. Keep up the good work and maybe we can meet in Milwaukee the end of July for Festa Italiana. everyone MAY THINK WE ARE FRUIT CAKES BUT LOVE FROM YOUR PROUD SISSIE!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Chemo caused MDS: Update

Hello Julie,
Thanks for keeping us updated. I wondered what happened to you, and it is great to hear the news.  Continue enjoying your life!

Re: Chemo caused MDS: Update

Marion, Lainy and Positivity,

Thank you for your kind and uplifting words.  It's nice to have been missed, but wish it was for something more fun than the MDS.

I waited to respond because I started the next round (round 4) of VIDAZA today (I get the infusion every day for 5 days in a row and then 3 weeks off), and I wanted to see what the new blood counts were so I could relay them to you all.  Of course, I was hoping for improvement.

Well, improvement came in 2 our of the 3 main blood cell lines.  I was disappointed that the white cells went down again, but they didn't totally tank, so I'm hoping that they will be better in another month.

The Platelets  went from 209K a week ago to 230K today on a scale of 130K to 450K)

The Hemoglobin went from 11.2 a week ago to 11.6 a week ago (12 is the bottom end of normal)

The white blood cells went from 3.94 down to 3.24.  (4.5 is the bottom end of normal).  It wasn't a horrible drop, but definitely the wrong direction.  Still must be careful about any infections...lots of hand washing.   

Tomorrow or Wednesday, I am supposed to call Mayo to set up whatever they want me to have for tests when I go up there and exactly when that will be.  Originally, I was to call just before I started round 4 and it would be for a bone marrow biopsy, but now I don't know exactly what it is that they want.   

The good news is that the platelets continue to climb and the hemoglobin appears to be now climbing on its own without benefit of a transfusion or the Procrit shot.  That's two out of three.....and appears to be a "partial" remission thus far for hemoglobin and platelets and those white cells are "trying".  They bottomed out after hanging in there until the last round which I assume indicates the VIDAZA was killing off the bad white cells that are abnormal.   Now, it seems that it's a tug of war between the abnormal cells and new good ones.   Keeping my fingers crossed the good guys win. 

On another subject.  Back when I was having chemo after the first ICC surgery, I had a horrible time with a port that was apparently very badly put in place by an IR guy.   It wasn't unusual for up to 8 needle pokes before the chemo nurses (often two of them working to get it in) could successfully access the port.  I never allowed the blood labs to be drawn from the port in case something was too low or high to allow for chemo.....it was that awful.  Each insertion was very painful., even with the lidocaine cream.  I had that port taken out the Monday after chemo was done and said if I ever needed another one, then I'd get a new one....but was not keeping that first one and have to have it accessed monthly to keep it open.  NO WAY!

Well, I was advised to get another port for the VIDAZA infusions, since there'd be a lot of them and we could keep it accessed for the week of treatments, so only one access with the needle unless I needed transfusion on an off VIDAZA week.   It was the best thing I ever did.   The new IT doctor (I refused to allow the first one touch me again) spent a lot of time working to put it in in such a way that it wasn't too deep,  wouldn't move around or  flip inside.   I had one nurse have a problem accessing and frankly,something made uneasy about her to start.  She tried once and then called in another nurse who got it immediately.  The two times I've had it accessed at my new local oncology office, I barely noticed the nurse inserting the needle.  They have one nurse who apparently only inserts needles in ports.   She didn't feel around for 10 min trying to decide where the port was...just touched it once and put the needle in.  NO PAIN!!!  I'm now to the point where I feel that it's going to be okay in the future.   For the first couple months I had the new port, each time, I would start to cry before they even cleaned the area....I had had such horrible experiences the first time and it's all I could think about.   What a difference.!!!

"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: Chemo caused MDS: Update

Dear Julie,

I am so sorry you have been going through this CR**. but so relieved to read your updates.

Big hugs are coming your way,

Catherine

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

Re: Chemo caused MDS: Update

After 6 months of chemo, now scheduled to meet with surgeon at UNC this Thursday for possible resection.

Re: Chemo caused MDS: Update

Crfisher,
All the best for your journey in curing your CC, hopefully you get good news from the surgeon.

Re: Chemo caused MDS: Update

Good luck with your meeting on Thursday with the surgeon. I will keep everything crossed for you!!

Let us know how things go.

My best to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.