It has been 5 years since my transplant and I can officially say I am cured now! I have been off all medications related to transplant for the past 6 months and really have not had any issues past couple years. The next doctor visit is in December 2015 and at that visit there may be a decision to make about doing a final bone marrow biopsy.
I recently attended the Siteman Bone Marrow survivors dinner and it was great seeing how many people have recovered fully and gone on with their lives. But there are still a lot of people who never get a transplant, or just have ongoing problems. So lets hope medical science keeps making great advances to allow blood cancers to become a manageable treatment and someday eliminate them entirely!
1461 was a great year right? Well I don’t know about that, but I do know it has been 1,461 days since my Stem Cell Transplant – that’s 4 years! When this all started, I was posting every day (mainly because I was in the hospital with nothing else to do). As time went on, I went from posting weekly, to monthly, to every now and then. Now it looks like I am on the yearly post schedule.
All that is good because I have not had any major health issues past couple years related to transplant. The doctor cut off the last of the purely cancer fighting drugs this past summer. I am mainly taking antibiotic medication and that should be discontinued some time in near future if everything looks good. The last ongoing issue I had was high liver enzymes from GVHD and that took over 3 years to stabilize. The last few lab results have finally been consistently normal.
Let’s look back on 2010 in St Louis sports. The baseball Cardinals finished 86-76, but did not make the playoffs. However, Adam Wainwright did win 20 games. But since 2010, the Cardinals have made the playoffs 3 years in a row with a World Series championship season in 2011. In hockey, the Blues finished 38-33-11, but did not make the playoffs. However, recent history suggests they may be going deep in playoffs this year. So it looks like the teams have mirrored my recovery, getting better year after year. Well, maybe not all teams. The Rams were 7-9 in 2010, after going 1-15 the year before. Based on their recent history though, looks like the Rams still have cancer and may need a transplant also – maybe to LA?
One more year and I can officially say “cured” from cancer. Stay healthy!
Today is the 3rd anniversary of my Stem Cell Transplant on September 30th, 2010. Other than a few lingering issues caused by medications, I have no signs of blood cancer and have been cancer free since the transplant. Now officially, you have to be in remission five years before the doctors will say you are “cured” but all things look good.
The past year the doctor has been lowering my medication dosage, which has caused a couple of issues. Dropping the Prednisone and Tacrolimus to every other day finally resulted in my first normal liver readings in three years, but I immediately had issues with rashes and hives. This may also be Graft vs Host Disease (GVHD) of the skin, but that cannot be confirmed without some tests and biopsys, which we won’t do because the symptoms are very mild. After a month of on and off flareups and taking some antihistamines during outbreaks, I have gotten that under control.
Sunlight can cause a lot of problems so I have to use a lot of sunscreen, which will be a lifelong thing. For the rashes/skin gvhd, I have some prescription lotion to control outbreaks. Since that one good liver reading, my numbers ticked back up a little again, so now we will stay at current level of medications for the time being. In some (distant?) future, I will eventually be off all medication!
Still doing monthly lab work but I only see the doctor every other month now. Flu shot will be the next thing and maybe some booster shots in the spring. Take care everyone!
It has been awhile since I posted at end of year and that’s because there is nothing new to post! I still have GVHD of the liver which is being treated with medication. My liver numbers have not changed much all year, but I was able to drop the Prednisone down to 2.5 MG every other day. Pretty much doing everything normal with no restrictions – just have to be careful with some things like sunscreen and keeping myself hydrated.
Have a good summer everyone, probably won’t post again till the fall.
Since there has not been many changes to my health status lately, I have not been posting as often. This is a good thing! Hopefully I will only post a few times in 2013. Let’s just review where I am at health wise as we close out 2012.
I was diagnosed with a blood cancer, myelodysplastic syndrome (MDS) in August 2010. MDS is just one of many kinds of blood cancers, the most well known being leukemia. Untreated, MDS will definitely turn into leukemia (and sometimes even if it is treated). It is generally treated two ways based on your age and health outside of the blood cancer.
The first treatment is chemotherapy and drugs with the goal of putting the cancer into remission. This works for a lot of people as you can be in remission for years. The downside for this method is eventually the maintenance drugs will no longer be effective and you will not be able to stay in remission. Again, this time frame may be many years, so if you are older this is probably an effective treatment. But some forms of disease are relatively mild and it is possible for these people to go 10, 20, even 30+ years on drugs alone with maybe plasma and chemo every now and then.
The second treatment is a bone marrow/stem cell transplant. This is the only way to “cure” the disease – there are no drugs right now to cure blood disorders. A transplant works by replacing your defective stem cells with stem cells from a donor and “rebooting” your bone marrow so it stops making bad cells and starts making good ones. In order to replace the stem cells, you have to kill off as many of the bad cells as you can with chemotherapy. The chemotherapy also keeps knocks out your immune system to keep it from attacking donor cells. Once you get the transplant (basically an IV in your arm), your donor cells have to graft with your bone marrow in the next 15 days or so. If this doesn’t happen, you are in a heap of trouble. After the initial graft there is a time period where the donor cells grow and expand and your immune system comes back online.
In my case, after about three months and a couple bone marrow biopsy’s the doctor could tell me I was 100% donor cells and all my blood counts were stable and rising. So I am in remission for my blood cancer (cancer doctors never want to say “cured”, but like all cancers if I stay in remission five years then they can officially say I am cured).
So all good right? Unfortunately, in treating the blood cancer I acquired a new disease called Graft-versus-host disease (GVHD) of the liver, a very common byproduct of the treatment. There are three big GVHD diseases that can effect people – skin, liver, and lungs. I had no skin or lung problems, but about 4 months after transplant my liver numbers skyrocketed. This was a sure sign of liver GVHD. Using steroids to treat GVHD in turn gave me a case of steroid induced diabetes for several months in 2011. Luckily the diabetes is gone, but after two years I still have liver GVHD as the chart shows below.
To the far right are my numbers before the transplant (all three enzymes were below 50). I have not had a normal liver panel since August 2010. Right now I have the liver numbers of an extreme alcoholic. But there is no pain and the only way I know there is an issue is the monthly lab work I am still doing.
The good news is GVHD can be treated with drugs. Prednisone is particularly effective and when I was on a high dose of that my liver numbers were almost normal. However, that is a nasty drug to take in high doses and causes a lot of other problems.
So this is where I am now as we close 2012. The doctor does not seem too concerned about the ongoing high liver numbers as he has seen this hundreds of times. He keeps saying eventually I will be off all drugs. I made it all the way through 2012 without having to be admitted to hospital and now I have all of my booster shots. Hopefully 2013 is another lucky year!
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 4,200 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 7 years to get that many views.
I am not updating these posts that often now, which is good, because it means there is no significant news. Since my last post, I had a Bone Marrow Biopsy and the results are in….drum roll…nothing changed. Well I shouldn’t say nothing. Everything is going as expected is a better description. The doctor see that my cells are all “donor cells”, and no abnormalities are showing. At this point, with my blood counts pretty much back to normal and not changing (in a bad direction) month to month, we should not see any bad things in the bone marrow. So another biopsy in a year, or if we have some radical change in blood numbers, or maybe never again!
My liver numbers are still high, but not that high, and really only the ALT is high. So the past few months we have been reducing some medication, and those liver numbers are staying the same. So that is all good. I am down to 2.5mg of Predinose a day which is no problem to handle. We are just following the long protocol to ween me off the other medications. And, yes the goal is to someday be off of all medication. That is different than an organ transplant where you have to take anti rejection drugs rest of your life. For those of you super interested in the medication I take, check out the More Information page.
I guess the biggest news I got from doctor’s office is Siteman Center is finally going to have all their medical records online for their patients to see. They are a little behind the times compared to other hospitals in the area. Maybe they need some help in their Information Systems department…..hmmmmmm😉
That’s it for now, I probably will only post one more time around the end of year.
Today is the two year anniversary of my transplant and for the most part things are going very well! We have very slowly been reducing the medication. My high liver enzymes are inching to the normal ranges again with only my alanine aminotransferase (ALT) numbers slightly elevated. So with my last office visit two weeks ago, the doctor reduced my Prednisone medication to 5mg, which is the lowest it has been in awhile. However, last time I was at 5mg, within a few months I was back up to 20mg when my liver started acting up again😦 But the difference this time is we have also been reducing some of the other medication which has its own issues. The goal is to be off all medication….someday!
Last month I participated in the annual Moonlight Ramble, a bike ride through St Louis streets at midnight near the time of a full moon. This was the 49th one, and I have probably done about half of them. I missed out in 2010, since I was prepping to go into hospital, but I did it last year and did the full 18 mile route this year. Next week, my doctor is doing Pedal The Cause, which raises cancer funding for the Siteman Cancer Center, where I was treated.
Health wise, there are really no restrictions I have right now. Sometimes I get some fatigue but not sure if that is from post cancer treatments or just me getting old😉 Next office visit, will have another Bone Marrow Biopsy. The last one was a year ago and with all the blood counts looking good there should not be anything unusual with the results. Also in the next couple months I will be getting more booster shots for shots I had this past winter and the flu vaccine.
As time goes on, these posts become more boring and that is a good thing! Two years ago today I got my transplant from IV
Just a little post updating my latest office visit. My liver numbers are trending down, still high, but slowly getting back in range. The doctor reduced one of my medications from three pills a day to two (Mycophenalte) but still taking same dosage of Prednisone, which is the one I would like to eliminate. None of the other medications affect me much. We attended the the 19th annual Blood and Marrow Transplant Celebration for Siteman Cancer Center (my 2nd). The gathering is getting so big, they have outgrown the Lumiere Casino Four Seasons Hotel, and will probably move the event next year, as they need an even bigger ballroom. Next month, will be attending a cancer survivors night at the ole ballpark. The two year anniversary of my transplant is coming soon, so they most likely will schedule me for another bone marrow biopsy. Should be all good, according to the monthly counts!
It has been a hot summer here in St Louis. Going through our second streak of 100+ temperatures which makes it hard to get any outdoor activities going! The doctor is always reminding me to be wary of the sun, using lots of sunscreen, which is something I never use to do.
The latest office visit went fine, a lot of my blood numbers are almost normal again. The one thing we have been dealing with the last year with the high liver enzymes is still going on, not much change from last month (even went up slightly). So, the doctor is going to put me back on a prescription I was taking about six months ago, Ursodiol, which is really a medicine for gallstones. He is using it “off label” as it also helps the liver work better. I didn’t have any side effects taking it last time, so it should not be an issue this go around. He really doesn’t want to increase Prednisone dosage since that causes other issues. As a side benefit, Ursodiol may lower my cholesterol, which was high in last test we did. Again, the doctor is not overly concerned about the high liver enzymes – they are not off the chart – and he has seen this in patients before where it takes a long time for them to stabilize.
Speaking of my doctor, he is going to participate in Siteman Center cancer fundraiser Pedal The Cause on October 6-7, 2012. He told me he got his bike out of storage and pledged to ride 50 miles! Check out his page Keith Stockerl-Goldstein Rider Profile . I may have to look into riding myself…..
Finally, some news and events coming from the good people at Washington University and Siteman Cancer Center. First, The New York Times did a nice story about one of the Wash U. Leukemia doctors, Dr. Lukas Wartman, who ended up getting Leukemia and had to go through all the various treatments. His doctor (which is his boss and my doctors boss), Dr. John Dipersio, talks about it in his blog. Some exciting genetic advances are being accomplished at Washington University in St Louis! In upcoming events, Siteman Day at Ballpark for St Louis Cardinals is Sept 8, which I will be going to. Even have a chance in raffle to throw out the first pitch! And on August 18, we will be going to the annual Bone Marrow Transplant Celebration Dinner at the Four Seasons Hotel in St Louis. Hopefully, I will get to go to another 35 or more of those dinners😉
That’s all for now, another update in about a month.