Husband with AML facing a stem cell transplant

Hi Mary and Dane…been pretty quiet from your corner of the world. How’s everything going? How were the results of the BMBX?

Lori,
Your message really hit the spot today for us! Thank you for sharing your platelet experience around this same time in your post transplant experience.
Your reassurance about how the healing process is so unique for every individual is so helpful as well. I agree that as soon as he can get along without the anti nausea meds, his brain will be clearer and his digestive system will start getting functioning better too. Chemo is bad enough on memory, processing, and functioning that it doesn’t help to have it clouded up by those additional meds!

Funny you mentioned the impact that reducing the anti rejection meds can have on chinerism, as they just reduced his Tacro today because it was too high. Hope that helps bring the chimerism results up.

Man, there are so many things to be vigilant about during this process.

Thank you for the positive vibes for a clean BMBX. We are hopeful it’s going to be good news! Your encouragement really goes a long way in helping us have a strong and positive attitude.

Thank you Lori!

Air hugs to you too!

Lori,
Your message really hit the spot today for us! Thank you for sharing your platelet experience around this same time in your post transplant experience.
Your reassurance about how the healing process is so unique for every individual is so helpful as well. I agree that as soon as he can get along without the anti nausea meds, his brain will be clearer and his digestive system will start getting functioning better too. Chemo is bad enough on memory, processing, and functioning that it doesn’t help to have it clouded up by those additional meds!

Funny you mentioned the impact that reducing the anti rejection meds can have on chinerism, as they just reduced his Tacro today because it was too high. Hope that helps bring the chimerism results up.

Man, there are so many things to be vigilant about during this process.

Thank you for the positive vibes for a clean BMBX. We are hopeful it’s going to be good news! Your encouragement really goes a long way in helping us have a strong and positive attitude.

Thank you Lori!

Air hugs to you too!

Hi Mary, Ooo anxiety is a cheeky little devil, isn’t it? Fills our heads with all kinds of negative thoughts! If it’s any comfort, fatigue isn’t uncommon well into many months after transplant. We all recovery at different levels and really, if there is still nausea plaguing Dane, that is a big culprit right there. It’s a stamina robber. I know I improved greatly once I was able to start working my way off the anti-nausea meds. I found that they can slow the normal peristaltic gut action and contribute to the nausea itself. I began relying solely on the sublingual Zofran melts just before eating. Slowly my guts improved. Before that time though, gaining weight was impossible. At least Dane isn’t losing so he’s holding his own right now. That’s an ok balance. He’s also having to limit some of the foods that would help pack on calories such as ice cream because of the mucus it causes. So I think he’s doing the best he can right now…this just takes time.

I checked back on my records. My blood numbers fluctuated from week to week. At day 59 my platelet level flagged as low, down to 144. A week later they were up to 183, only to have dropped again the next week. There’s still a lot of recovery taking place inside Dane’s body! Try not to get too hung up on numbers right now. If his doctor isn’t worried, then you don’t need to be either.

The BMBX will be a good source of information. Pretty sure you’ll be having some ‘scan-xiety’ with waiting on those results. With the one number lower on his chimerism his doctors are making sure things are going well overall with the BMBX. Occasionally if there is one part of the chimerism not at 100% the transplant doctor may consider infusing some of the cells that were held back and frozen after the initial transplant. This ‘recharges’ the immune system to make it a little more aggressive. Similar results can be sometimes be achieved by reducing the amount of the anti-rejection meds which have helped to hold the newly implanted stem cells back a little until. By lowering the tacro trough, they become more aggressive and may help raise that chimerism. Again, we all recover at different levels. His team at Rush is on this! ☺️

Sending positive thoughts your way for a super clean BMBX. I hope the nausea disappears soon! Air hugs to both of you!

Hi @loribmt
Hope all is well!

Today is day 57 for us. Dane is doing well overall, however with lingering fatigue and nausea. He is eating, but neither losing more or gaining weight.
Today’s clinic visit revealed his platelets have gone down to 125,000, which have been slowly declining over the past month. Doc isn’t too concerned with it yet but he is cautious. Latest chimerism test shows 100% on two numbers and 70% on the third number. Hoping it continues to trend upward. These test results lag a couple weeks so we have to be patient with getting updates.
Given the high risk nature of his AML, a bone marrow biopsy is being done today too. So we’ll get all kinds of insight about what’s going on in his blood and marrow by next week, at least preliminarily.

We are scheduled to meet with a new hematologist in early September to discuss recommendations for maintenance chemo going forward. As you may recall, we were not happy with his original hematologist, so hoping we like this one better. But most importantly, I pray we are discussing only positive bone marrow test results. 🙏

That pesky anxiety is starting to do a number on both of us…

Have you heard of platelet counts bouncing around a bit after transplant?
Mary

Hi Mary! So sorry to hear about the nausea still hanging around. Some patients are really lucky and it’s not much of an issue and then again, there are some of us who didn’t win that lottery ticket!
Every BMT patient has their own rate with recovery and progress because each has a unique set of extenuating circumstances which led them to requiring the transplant in the first place. Some of us have had many months of chemo cycles for aggressive blood cancers previous to the transplant. Others are fortunate enough to only have pre-transplant conditioning and so their bodies haven’t faced as much trauma. As much as the chemistry helps us, it does take its toll. And of course, the medical condition for which we’re being treated can also impact the recovery time, along with all the meds and transplant itself. Brain fog can linger for a few months but seemed to clear for me around the same time my stamina grew. I did lots of sudoku and word games, crossword puzzle, etc.

Quite honestly, I think Dane is doing great considering all he’s been through. The lower chimerism number may improve on its own or may see some improvement by the bmbx. Occasionally the transplant doctor will order an infusion of the reserved donor cells which can give the previously transplanted cells a boost. It sounds like everything else is going well except the difficulty in swallowing. But wow, he’s making awesome progress there! He’s thriving and active…that’s what counts! He may not be getting 100% of what is desired as far as nutrition but he’s not suffering from malnutrition. When his swallowing improves and his appetite returns you’ll be amazed at how quickly the pounds and ‘muscle meat’ can return.

If it helps, I also struggled for about 2 months to get down meaningful amounts of protein and foods. Energy was slow to recoup too. I walked daily, tried to lift a few weights (small milk jugs filled with water) and worked with exercise bands to help with muscle mass. It only helped marginally. Once I was able to eat well again and put on more miles walking, it was a more rapid improvement. The anti-nausea meds were with me for quite a while too.

To refresh my memory I just took a look at a couple of my journal entries. At Day 37 I was down to just using sub lingual Zofran before meals and had daily bouts of ‘morning sickness’ that came in waves. Still had my “barf-o-matic” bag with me wherever I went. 😂 I had a cute little carry-bag for my shoulder. In it, besides essentials for the hours at the clinic for infusions, I had my ‘bom’ bag…a large ziplock lined with paper towels…just in case!
By Day 50, I made mention that I no longer had unpredictable nausea but still had some that came on for about 2 minutes after a bowel movement.
Day 60’s entry was a hoot. Apparently it was a big day for me. I had finally tipped the scales at a whopping 50 kilograms! I got high fives from my doctor and his staff! (I had been down to 43 kilos) My taste buds had grown back so I could actually taste food again, nausea had disappeared and there was ‘meat’ being replaced on my bones.

When my strength and stamina returned, my doctor had me check in with PT. The time spend with the therapist really helped me get back in shape with core strength for balance and also get my glutes back. LOL. Literally ‘lost my butt’ during the months of treatment with AML and the transplant. I did walk 4 miles per day during my chemo rounds in the hospital pushing my IV around the bed tower! But it did nothing to keep the booty from looking like deflated sad old party balloons! 😂😂

Anyway, where I’m going with this meandering reply is that you are amazing with wrangling all of Dane’s needs from food/nutrition, to home infusions, meds and outings! You two are an invincible team. It’s not easy when two active people are having limits to their daily normal existence. This is only temporary though! It’s ok to not be ok and to have life slow down. The old proverbial ‘take it day by day’ really rings true. Soon enough this will be a summer in the rear view mirror! Air hugs to both of you!
How’s that new grandson??

Hi Mary! So sorry to hear about the nausea still hanging around. Some patients are really lucky and it’s not much of an issue and then again, there are some of us who didn’t win that lottery ticket!
Every BMT patient has their own rate with recovery and progress because each has a unique set of extenuating circumstances which led them to requiring the transplant in the first place. Some of us have had many months of chemo cycles for aggressive blood cancers previous to the transplant. Others are fortunate enough to only have pre-transplant conditioning and so their bodies haven’t faced as much trauma. As much as the chemistry helps us, it does take its toll. And of course, the medical condition for which we’re being treated can also impact the recovery time, along with all the meds and transplant itself. Brain fog can linger for a few months but seemed to clear for me around the same time my stamina grew. I did lots of sudoku and word games, crossword puzzle, etc.

Quite honestly, I think Dane is doing great considering all he’s been through. The lower chimerism number may improve on its own or may see some improvement by the bmbx. Occasionally the transplant doctor will order an infusion of the reserved donor cells which can give the previously transplanted cells a boost. It sounds like everything else is going well except the difficulty in swallowing. But wow, he’s making awesome progress there! He’s thriving and active…that’s what counts! He may not be getting 100% of what is desired as far as nutrition but he’s not suffering from malnutrition. When his swallowing improves and his appetite returns you’ll be amazed at how quickly the pounds and ‘muscle meat’ can return.

If it helps, I also struggled for about 2 months to get down meaningful amounts of protein and foods. Energy was slow to recoup too. I walked daily, tried to lift a few weights (small milk jugs filled with water) and worked with exercise bands to help with muscle mass. It only helped marginally. Once I was able to eat well again and put on more miles walking, it was a more rapid improvement. The anti-nausea meds were with me for quite a while too.

To refresh my memory I just took a look at a couple of my journal entries. At Day 37 I was down to just using sub lingual Zofran before meals and had daily bouts of ‘morning sickness’ that came in waves. Still had my “barf-o-matic” bag with me wherever I went. 😂 I had a cute little carry-bag for my shoulder. In it, besides essentials for the hours at the clinic for infusions, I had my ‘bom’ bag…a large ziplock lined with paper towels…just in case!
By Day 50, I made mention that I no longer had unpredictable nausea but still had some that came on for about 2 minutes after a bowel movement.
Day 60’s entry was a hoot. Apparently it was a big day for me. I had finally tipped the scales at a whopping 50 kilograms! I got high fives from my doctor and his staff! (I had been down to 43 kilos) My taste buds had grown back so I could actually taste food again, nausea had disappeared and there was ‘meat’ being replaced on my bones.

When my strength and stamina returned, my doctor had me check in with PT. The time spend with the therapist really helped me get back in shape with core strength for balance and also get my glutes back. LOL. Literally ‘lost my butt’ during the months of treatment with AML and the transplant. I did walk 4 miles per day during my chemo rounds in the hospital pushing my IV around the bed tower! But it did nothing to keep the booty from looking like deflated sad old party balloons! 😂😂

Anyway, where I’m going with this meandering reply is that you are amazing with wrangling all of Dane’s needs from food/nutrition, to home infusions, meds and outings! You two are an invincible team. It’s not easy when two active people are having limits to their daily normal existence. This is only temporary though! It’s ok to not be ok and to have life slow down. The old proverbial ‘take it day by day’ really rings true. Soon enough this will be a summer in the rear view mirror! Air hugs to both of you!
How’s that new grandson??

Good morning Lori,
Today is day 42!
It’s been a busy couple of weeks managing symptoms, home health, appointments with other providers, etc.
He is stable, most blood tests are all going in the right direction, and his energy is returning ever so slightly every day.
He is only able to get on half of the protein and calories he aims for each day. I am cooking him high protein soups and stews, and shakes. These are his preferences at the moment.
The nausea meds are taken on a schedule but it only helps to a certain extent. He is also off of dairy unfortunately for the most part because the phlegm it causes in his throat. Swallowing is getting better with the help of swallowing exercises and therapy. Thank goodness for the competent, well trained clinicians like the speech therapist we found! I’m still giving IV Magnesium a couple times a week plus he has started oral magnesium. We can’t wait for him to graduate away from the IV version of magnesium and get the catheter removed.

A rash on his trunk has cleared up (not GVHD!). An eye infection (also not GVHD) has also cleared up!

He also drove with me a couple times this week. He is not yet cleared to drive alone. Maybe soon?

He tested 100% donor cells on two of three numbers of the Chimerism test, and 63% on the third. The doctor said at the last clinic visit that he looks better than he expected!

So all in all, good news to report. I’m still anxious about next steps - bone marrow biopsy next month, decisions about maintenance chemo going forward, and for more improvements in his weight, muscle mass, overall energy, his chemo brain fog to lift. What will be his new normal I often wonder.

Trying to stay in the present, grateful for how far we have come. I’m just starting to process the emotions and all that we have been through these last six months, in the little downtime I have now. I feel my journal calling me to write it down…

Hope you are enjoying the summer! Your presence in “our” world of souls facing this life altering thing is a most precious gift. No one in our life comes close to being able to ask the right questions or truly understand what we are going through.
Thank you!

Mary

Good morning Lori,
Today is day 42!
It’s been a busy couple of weeks managing symptoms, home health, appointments with other providers, etc.
He is stable, most blood tests are all going in the right direction, and his energy is returning ever so slightly every day.
He is only able to get on half of the protein and calories he aims for each day. I am cooking him high protein soups and stews, and shakes. These are his preferences at the moment.
The nausea meds are taken on a schedule but it only helps to a certain extent. He is also off of dairy unfortunately for the most part because the phlegm it causes in his throat. Swallowing is getting better with the help of swallowing exercises and therapy. Thank goodness for the competent, well trained clinicians like the speech therapist we found! I’m still giving IV Magnesium a couple times a week plus he has started oral magnesium. We can’t wait for him to graduate away from the IV version of magnesium and get the catheter removed.

A rash on his trunk has cleared up (not GVHD!). An eye infection (also not GVHD) has also cleared up!

He also drove with me a couple times this week. He is not yet cleared to drive alone. Maybe soon?

He tested 100% donor cells on two of three numbers of the Chimerism test, and 63% on the third. The doctor said at the last clinic visit that he looks better than he expected!

So all in all, good news to report. I’m still anxious about next steps - bone marrow biopsy next month, decisions about maintenance chemo going forward, and for more improvements in his weight, muscle mass, overall energy, his chemo brain fog to lift. What will be his new normal I often wonder.

Trying to stay in the present, grateful for how far we have come. I’m just starting to process the emotions and all that we have been through these last six months, in the little downtime I have now. I feel my journal calling me to write it down…

Hope you are enjoying the summer! Your presence in “our” world of souls facing this life altering thing is a most precious gift. No one in our life comes close to being able to ask the right questions or truly understand what we are going through.
Thank you!

Mary

Good morning Lori,
Today is day 42!
It’s been a busy couple of weeks managing symptoms, home health, appointments with other providers, etc.
He is stable, most blood tests are all going in the right direction, and his energy is returning ever so slightly every day.
He is only able to get on half of the protein and calories he aims for each day. I am cooking him high protein soups and stews, and shakes. These are his preferences at the moment.
The nausea meds are taken on a schedule but it only helps to a certain extent. He is also off of dairy unfortunately for the most part because the phlegm it causes in his throat. Swallowing is getting better with the help of swallowing exercises and therapy. Thank goodness for the competent, well trained clinicians like the speech therapist we found! I’m still giving IV Magnesium a couple times a week plus he has started oral magnesium. We can’t wait for him to graduate away from the IV version of magnesium and get the catheter removed.

A rash on his trunk has cleared up (not GVHD!). An eye infection (also not GVHD) has also cleared up!

He also drove with me a couple times this week. He is not yet cleared to drive alone. Maybe soon?

He tested 100% donor cells on two of three numbers of the Chimerism test, and 63% on the third. The doctor said at the last clinic visit that he looks better than he expected!

So all in all, good news to report. I’m still anxious about next steps - bone marrow biopsy next month, decisions about maintenance chemo going forward, and for more improvements in his weight, muscle mass, overall energy, his chemo brain fog to lift. What will be his new normal I often wonder.

Trying to stay in the present, grateful for how far we have come. I’m just starting to process the emotions and all that we have been through these last six months, in the little downtime I have now. I feel my journal calling me to write it down…

Hope you are enjoying the summer! Your presence in “our” world of souls facing this life altering thing is a most precious gift. No one in our life comes close to being able to ask the right questions or truly understand what we are going through.
Thank you!

Mary