Husband with AML facing a stem cell transplant

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

Wow. Day24!!!! One day at a time works. Not all symptoms are the same every day. I hope i throat is better. Doctors and RNS will find a solution, but our tricky bodies sometimes do not cooperate.
Every step, as long as he gets up.
Good thought and prayers continue.

Hi Mary, it’s been a couple of weeks since we’ve chatted. I’m expecting there’s been some positive changes since then. How’s everything going?

Good morning Lori,
Thanks for the swallowing tips! He is already trying some of them. He has a swallow study scheduled for next week. His regular doc inaction so we saw a NP in clinic yesterday. All counts are stable and in the normal range. I will be giving magnesium IV every other day for the next week.
I will ask about the oral magnesium option you suggested. As of now they have prescribed oral magnesium stearate with protein that he hasn’t started yet.

It’s the dysphasia - coughing and swallowing issues, especially with more slippery liquids - that continues to be our biggest challenge every day. It’s hard enough to have an appetite but when he starts coughing because the liquid isn’t going straight down his throat, that brings on a gag reflex 🤦🏻‍♀️. Looking forward to getting the swallow study done and getting him help with this. Hope the healing of his throat tissue also improves it as well.

He hasn’t had any big energy days like a new puppy yet. He does get up and walk up to a mile every day so that’s been fairly steady. Today is day 24 so he’s still a newbie.

One day at a time.

Enjoy the weekend.

Mary

Good morning Lori,
Thanks for the swallowing tips! He is already trying some of them. He has a swallow study scheduled for next week. His regular doc inaction so we saw a NP in clinic yesterday. All counts are stable and in the normal range. I will be giving magnesium IV every other day for the next week.
I will ask about the oral magnesium option you suggested. As of now they have prescribed oral magnesium stearate with protein that he hasn’t started yet.

It’s the dysphasia - coughing and swallowing issues, especially with more slippery liquids - that continues to be our biggest challenge every day. It’s hard enough to have an appetite but when he starts coughing because the liquid isn’t going straight down his throat, that brings on a gag reflex 🤦🏻‍♀️. Looking forward to getting the swallow study done and getting him help with this. Hope the healing of his throat tissue also improves it as well.

He hasn’t had any big energy days like a new puppy yet. He does get up and walk up to a mile every day so that’s been fairly steady. Today is day 24 so he’s still a newbie.

One day at a time.

Enjoy the weekend.

Mary

Good luck to you and your husband. A friend of mine is also in the process of qualifying for a stem cell transplant so we r beginning to navigate this path as well. Where I live in south central Kansas we have an agency called Southcentral Kansas Aging and Disability, if you have something like that where you live you might reach out as they have people who can come to the home to help with care giving for your spouse and helping you with household chores. Good luck I pray all goes well for you.