The Next Challenge

It has been quite some time since I last posted. I am doing well. Blood counts are stable and and as expected. I have received a couple of rounds of immunizations, and have more to receive. I am exercising and continuing to rebuild.

Two years ago today I had my stem cell transplant. I feel blessed that I have made it so far, and will do my best to go the distance. What that distance is, no one knows, and I hope it is long. I did not get to this point by myself. The wisdom of my doctors and the support of all the people looking after me (especially my family) got me to this point. It is amazing what can happen when we persevere, listen to medical experts and care for each other.

I also started my 23rd chemo cycle this week. After this cycle completes I have only one more to go. I do plan on returning back to work in late August or early September, whatever that may be. My appointments with my transplant doctor continue to be held remotely, with the next one scheduled for this week. My last biopsy, originally scheduled for July, will be pushed out to August or September.

I hope everyone has the chance to enjoy the summer. Stay safe, stay healthy, and take care of each other.

I hope everyone is staying healthy during this Covid-19 situation. We are hunkered down and in good shape to ride things out. One of the side effects of my transplant recovery is that I am well-practiced in social distancing.

I was scheduled for an MSK appointment next week and a second round of immunizations. Given the current situation in NYC my appointment was rescheduled to May. I was able to arrange to have my second round of immunizations be completed locally with my primary care physician, which were done today. Since I am still immune-compromised they took me in before walk-in hours and quickly completed the shots.

The week prior to last I finished cycle #18 of chemo shots. I generally tolerate them well but do feel some fatigue during the cycle. This fatigue really became evident when I went for a lengthy hike with some friends in the Pennsylvania woods. It was a challenging ten mile hike with over 4,000 feet of elevation change. I made it through the hike, but I sure was dragging after the first climb.

This past week I returned to MSK for a vaccination workshop. I received six vaccinations – three to a side so my arms got a workout. I’ll have to repeat that for two more cycles in the near future. Then, more vaccinations, but just a couple more.

It has been a very long road but my immune system steadily crawled back from zero to a point where I can start getting revaccinated. The process will take several months and they won’t introduce any live viruses until two years after transplant. The first set of vaccinations will be done at MSK, while most of the remainder can be locally completed.

Some additional 1.5 year biopsy results have come in. I am still 100% donor. Those industrious donor stem cells are doing their job and seem to have taken over the neighborhood. Still waiting for the immunity level results.

Initial results show no leukemia detected! So far, so good. Waiting for the detailed results in order to determine whether I can proceed with a vaccination plan. I have completed cycle #17 of the chemo shots. Only seven more cycles to go.

I hope everyone was able to enjoy the holiday season. It has now been just past two years since I was diagnosed with AML. Last week I traveled to MSK for a pulmonary test, check-up and 18 month biopsy. No issues identified so far. My counts were in range and we still have to wait for the results for the biopsy. It will take several weeks to get all the analysis, but we should hear much sooner if any leukemia was detected. I am feeling well so I am optimistic the outcome will be good. We will also be waiting for my immunity level details. If those are satisfactory then it looks like I can start getting vaccinations over the next six months.

This week I started my 17th cycle of chemo shots. The current plan was to continue for 18 cycles, but since I am tolerating them well it was decided to extend to 24 cycles in order to help ensure no relapse. 162 shots completed, only 78 more to go.

Well, I am still around. Life has been fairly routine and I don’t want to bore anyone with mundane details. I just finished my 16th azacitidine shot cycle. Only two more to go. My blood draws are as expected and I feel fine. I definitely feel better that I did two years ago right before I was diagnosed. My next biopsy is scheduled for the second week in January. The outcome of that biopsy will dictate next steps – whether I can start on a vaccination protocol or need to wait longer.

I received additional information from my last biopsy. My immunity level still needs to increase before I receive any live vaccinations. I was hoping for swifter progress but immunity recovery can take some time. My next check-up is in the October timeframe, but I won’t receive another biopsy until January. Not until the next biopsy will we get additional information on immunity status.

This week I have started my twelfth cycle of chemo shots. For now only six more cycles to go.

Some additional 1 year biopsy results have come in. I am now 100% donor. That means the donor stem cells (the good guys) have taken over, and the previous host cells (the not-so-good guys) are not detectable. We are quite happy about this.

Still waiting for immunity results to come back.

Last week I traveled to MSK for a series of tests and my one year biopsy. My counts are within range and nothing seemed out of ordinary. The initial results of my biopsy indicated no leukemia present, which we are all quite happy about. It will take a couple of more weeks for the detailed analysis to be completed. That will tell us more about where my immunity stands and other genetic details. Based on my immunity level a vaccination protocol will be planned for the next several months.

I won’t have to return to MSK for another three months. The frequency of the biopsies will decrease. If all goes well I should only receive two more – at the 1.5 and 2 year marks. I will continue with the monthly chemo shots since I have been tolerating those well. We decided to extend those out to 18 months. This week I am working on my 11th cycle so I am not quite done with those yet.

One year ago today I received my stem cell transplant. I am now one year old. My transplant occurred at 6:33 pm on the 6th of July, 2018. The execution of the transplant was quick; all it took was a prepared syringe that was injected into my IV. The majority of the work occurred before and after the actual transplant.

My family surprised me with a birthday cake. You can tell it was a surprise since I dressed so nicely for the photo. And yes, I was able to blow out all the candles at once.

Today it has been one calendar year since I was admitted to MSK. My transplant anniversary (and new birthday) is still a couple of weeks away. I have been doing well, trying to stay healthy and working through the monthly maintenance chemo shots. Currently I have planned only two more cycles of chemo shots.

My next appointment at MSK is not until mid-July. I’ll get my next biopsy then in order to see where I stand.

It is good to have some warmer weather and sunshine, although I need to protect myself from getting too much sun since even a mild burn can cause issues with my current level of immunity. So, I use sun hoodies and plenty of sunscreen if going out. I am still very cautious with exposure, following the same rules as before.

It has been quite some time since I last posted. It has been fairly quiet and routine, which is good. I have now crossed the ten month threshold since my transplant. My next check-up with my transplant doctor won’t be until after the one year mark in July.

I still follow the same constraints and continue to be careful until my immunity comes back and I get vaccinated. There are lots of nasty critters out there I need to stay away from (measles!).

Last week I completed my 9th azacitidine shot cycle. Only three more to go!

It has now been nine months since my stem cell transplant and it is going well. I had my nine month biopsy last week and initial results indicate no leukemia detected. That is great news! I am still waiting to hear back on any updates on my immunity status.

I continue to exercise and use the same precautions in order to avoid infections. A major infection can still wreak havoc with the recovery process so better to stay conservative at this point.

This week I am receiving my 8th cycle of chemo maintenance shots. Besides some site soreness and minor fatigue the side effects are not significant. Only four more cycles to go.

Things remain routine for now. I won’t bore anyone with the mundane aspects, so I will skip next week’s post. My MSK appointment is toward the end of next week so I should have some updates in two weeks time.

The past week was quiet and routine. For fun I decided to enter the 2019 World Rowing Virtual Indoor Sprints hosted by Concept 2. You row 1,000 meters, record your time using their app, and upload it to their website. I ended up 224/494 for my age group, which is not too shabby for a recovering anemic cancer patient. I am still somewhat confounded by the dichotomy – I can work out but a simple infection can take me out. It will be a great relief when I start regaining some immunity.

It has been awhile since I have posted – I need to get back into a rhythm of weekly updates. So far it has been 8 months since my transplant. Recovery is stil fairly routine at this point. At the end of the month I return to MSK for my 9 month biopsy. I hope that biopsy will show the signs of a returning immunity system. I will also get checked to see if we can remove one of the daily antibiotics that I take.

This week I started my 7th cycle of chemo maintenance shots. I am planned for a year’s worth, so I am now halfway to that goal. The side effects at this point are still minor.

I am still under the same constraints with diet and exposure to others. I follow the news closely if there are any alerts or outbreaks of diseases since I am not vaccinated for anything. I am still exercising and am making some progress in getting back some conditioning, although I am still far from where I was before this all began.

Last week I traveled to MSK for an appointment with my transplant doctor. All is well and as expected. The polar vortex impacted NYC so it was a brisk walk to the hospital from the shuttle drop-off location. The doctor confirmed that I still need to adhere to all previous precautions. I see her again in two months. By then if I am clear of any infections I may be able to stop taking one of the daily antibiotics.

Physically I am getting a little stronger. I went on a lengthy hike in the Pennsylvania woods this past weekend with some friends. It included a lot of elevation change and was challenging, but it was good to get a long hike in. I am hoping it helped stimulate my cells to work hard.

This week I start my 6th cycle of maintenance shots (after this cycle only 6 more cycles to go, so almost halfway done).

It has been pretty routine here lately. No issues have surfaced. Boring is always good.

This week I travel to MSK for a blood draw and check-up with my transplant doctor. Hopefully I will get more detailed information on the results of my last biopsy. I am also curious on whether I have any new t-cells starting to show up.