Stem Cell Transplant Decision & Success

@loribmt
I had my 2 month follow up. As they write in all your follow-ups, I am day 555 as of Friday. Day 556 after transplant today. I saw the Dr as the nurse is on vacation. I need to get pictures of my hair to show her in January. She was saying in August she was obsessed with my hair. The Dr moved me to every 3 months for now. All my bllod numbers are in range.
BUT, I have been having yellow pee. Yes, at work, not enough water for a number of days. My number was 115. That was my bad number and all my responsibility. As he told me in my first year after sending me for hydration 3 times at least, I am killing my kidneys. I thought how often I had yellow pee through the decades and never thought why it was happening. My kidneys and body need water. This is how a person who has never been sick might end up with a severe illness.
I am stocking up on my water. I buy many bottles and figure i will keep bottles empty at work and get to a fill station on campus as often as possible.
He only was excited to tell me i was getting my 2nd shingle shot and in June of 2026 I get my live vaccine, the MMR. Crazy. I asked him how long i will take Acyclovir and he said 6 months after the MMR vaccine.
I wanted to be a good patient. My water is it. I must do what i had done and drink up, so my next blood test will have me back in the 80's.
Check out "cancer decoded" on utube. The Dr who bought the LA Times made his fortune with medicine. I watched it to understand more about my sister. I had Lynparza pills in my breast cancer treatment with a side effect that may lead to MDS. All the stars in my body aligned and I got MDS. My sister agreed to infusions of Avastin.
Lynparza helps repair DNA in cancer cells. Avastin blocks the formation of blood vessels that feed tumors. I thank God she is talking the one she took.
We have choices in our treatment. I love the cancer decoded series; May Clinic, Md Anderson and City of Hope and more who show me treatments are hearing and being developed that will give more cancer patients long life.

@loribmt

Remind me when you found out your blood type!! I am having less blood drawn as i am stabilizing.
I had an interview with the online site i was helping on for genetics patients. Fun. The are taking the results to see what direction they will go. I suggested if they have not, go to Mayo Clinic Connect to see what a fabulous resource this site is. They are giving me a $25.00 gift card for participating.

Lori,

Thank you very much for the reply and all of the information. I am being treated at Barnes-Jewish Hospital in St. Louis, MO and the recovery will be a combination of the hospital and home for the first 100 days. I will be in the hospital until my blood counts recover then return home with follow appointments to the doctor every week.

I am grateful to have found this group. The most difficult part of leukemia is going through it alone. No matter what, if you have cancer it can get very lonely and it has been difficult for me to find a support group.

Thank you again for the reply and all of the information.

@jeffhampton how are you currently feeling ? How hard was the process?

Good morning, @katgob Congratulations on your excellent checkup! You can tell your doctor is comfortable with how things are going by the length of time between visits. Extending the leash to 3 months between appointments is a very good sign. When we’re used to going so frequently, like weekly, monthly, etc., it can be a little intimidating to go so long without a face to face with our transplant team members. But each extension of time is also the encouragement we need to realize things are going as planned and we’re getting ready to launch!! ☺️

In my later years post transplant I’d been at every 6 months, which felt like forever between appts. Then last October I gulped when I heard, “Let’s plan to see you in a year!” A brief moment of internal panic but then I realized, this was it!! This was my sign that my doctor was completely assured that I was, indeed, ready! I also have 6 month interval appts with my local oncology team so basically I am seen every 6 months (with labs) by someone anyway. But not going home to the Mother Ship for a year felt intimidating.

However, this past month I returned for my annual follow-up and it was a jubilant reunion. I brought 4 large boxes of chocolates to be shared between 2 departments (along with thank you notes). It was so awesome to see my team again…both the transplant floor and then my doctor and his team.
I was his last patient of the day so my husband and I were treated to a really nice, long visit with him. My doctor is active in mentorship in the medical field and quite supportive of my involvement in Connect. So it’s always an interesting visit with learning new developments in BMT, blood cancers, etc.
What was notable this time was both my liver and kidney numbers were excellent! That was a first in the past 6+years! Like you, I drink a large amount of water daily and that has proven to really improve and maintain kidney numbers. I drink a minimum of 64 oz of room temp water daily but often it’s more than that. So I wish you well in getting your numbers back to a happy level again.
You know you’re getting to be ‘a big girl’ when you’re finally able to get the MMR post transplant! ☺️ Mine was delayed for almost 5 years. And with the rapid uptick in measles across the US it’s extremely important for everyone to be vaccinated!! So be cautious. Measles is the most virulent communicable disease which explains the rapid escalation.
I know the vaccination schedule can be a bit rough but it is also part of helping our new immune systems to restore us to healthy adults again! We lost our accumulated immunity to so many diseases and need those vaccinations to keep us safe.
I’m so sorry both you and your sister have had breast cancer and you with MDS. Some of the treatments can certainly have collateral damage. But it can also be a trade off in the ability to extend our lives. I knew the danger going in when I was treated aggressively for AML. But without those treatments, as there were no alternatives, I would have been gone for a good 5 years by now. My trade off was life now and worry about death later…knock on wood, so far so good!

So happy that you continue to do so well, my friend! I always look forward to your updates! ☺️

@loribmt
You are always be a Sunshine Mentor here for so many peoples struggling in every day life due to Cancer. Your kind words and great experience is something cant be defined ,You are just like angel for many people here .So cheers to your Spirit first of all and I am praying for you all Lovely Soul .
Good to connect here . Thanks for everything!!

@katgob I ordered a kit to check my blood type from Amazon. It’s super easy to do…harkened back to all Biology 101. 😅 My blood type changed from B+ to O+
One note: If you ever need blood products make sure that they are irradiated first before transfusions. Residual lymphocytes (leukocytes) in blood products can cause GVHD.

I forgot all about the research projects and clinical trials I was involved with! You just jogged my memory! There were a bunch that netted some fun ‘rewards’ like the gift cards. My favorite gift was a really nice blanket that was timely! Needed the heat and coziness…I still use it! I think that was for a phycological study on PTSD. I was followed for some time with that one.
I know another study was for detecting CMV at a lower level…hm. There were at least 2 others but I’m drawing a blank. I know there were always a couple of extra vials of blood drawn for whatever the studies were.

Life has been interesting since, huh? ☺️

@lmkmom I’m doing ok. Everyday seems to be a new adventure in recovery. An example; up until a month ago I was taking medication for low blood pressure and then it flipped causing me to take medication for high blood pressure.

My blood counts have been depleting lately but they tell me I’m not relapsing. The issue there is fatigue caused by low hemoglobin.

Recovery has and continues to be challenging. I told my doctors a few months ago that if they would have been straight forward with about all of this I would not have gone forward with the transplant.

I guess I would just like to have a normal life again and I’m not sure if that’s possible. My normal is being able to run ultramarathons, not get tired so quickly, not having all of the joint and bone pain and actually being able to remember the things people tell me.

Anyway, I appreciate you reaching out and I’m sorry that most of this sounds negative because at the end of the day I am grateful to be alive.

I hope you are doing well.

Jeff

@lmkmom I’m doing ok. Everyday seems to be a new adventure in recovery. An example; up until a month ago I was taking medication for low blood pressure and then it flipped causing me to take medication for high blood pressure.

My blood counts have been depleting lately but they tell me I’m not relapsing. The issue there is fatigue caused by low hemoglobin.

Recovery has and continues to be challenging. I told my doctors a few months ago that if they would have been straight forward with about all of this I would not have gone forward with the transplant.

I guess I would just like to have a normal life again and I’m not sure if that’s possible. My normal is being able to run ultramarathons, not get tired so quickly, not having all of the joint and bone pain and actually being able to remember the things people tell me.

Anyway, I appreciate you reaching out and I’m sorry that most of this sounds negative because at the end of the day I am grateful to be alive.

I hope you are doing well.

Jeff

@jeffhampton While I was recovering from my SCT, I also thought that I would never put myself through that again. My recovery was brutal and painful slow.

I am over 9 years post transplant. I’m not in the same shape I was before AML diagnosis, but I have come to accept it as my new life. I feel like I’m a different person from the one I was before. My priorities have changed and I appreciate small things more than before. I have recovered well and have been working full time for the last 7 years. My life is very fulfilling and my cancer and transplant journey has given me a new direction in life, which makes me look at all the suffering with some sort of appreciation.

I know you are dealing with day to day pain and limitations that are very discouraging. Keep taking one step at a time towards recovery - you will get better and your life will get better!