Husband with AML facing a stem cell transplant

Posted by mary612 @mary612, Mar 15 7:05am

Hello!
My husband was diagnosed with secondary AML with 2 high risk mutations in January. The prognosis is not good. He is being treated at Northwestern medicine in Chicago. He is responding to the treatment after the first cycle but not full remission yet. They are recommending a stem cell transplant. I’m full of all the feelings! Scared, but trying to trust that my faith will get us through this.
My question is related to caregiver support after the transplant when he is discharged home. We don’t have a lot of family or big social circle nearby.
Any tips on the types of things we should start thinking about in order to give me and my husband the support we will need?
I found this group through the very hopeful messages of @loribmt. Thank you for your positive messages of hope!
Wishing everyone here only the best outcomes and graces!

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

mary612 | @mary612 | Jul 6 8:28am

In reply to @loribmt "Hi Mary! I remember how it felt to finally be home again after hospital life. So..." + (show)

@loribmt

Hi Mary! I remember how it felt to finally be home again after hospital life. So I’m sure you and Dane are both sensing relief to be on the other side of transplant now and enjoying the comforts of being back home together.

He has my empathy with the persistent issues following mucositis. I didn’t have excess mucous all the time but certain foods were triggers which then created difficulty in swallowing for a while. My dietician gave me a list of foods that were potential culprits and when I avoided those, such as milk, protein shakes, cheese, etc., it helped. I’m not home right now so I don’t have access to that list in my files. But here is a link to a list of foods from lunginstitute.com which can cause excess mucous to form. https://lunginstitute.com/foods-that-cause-and-kill-mucus/

I also learned a trick from one of my transplant nurses on how swallow pills! Potassium pills were the worst. But some pills you can’t crush so the trick is to not tip your head back when swallowing. We have a tendency to do that when we take meds.
To avoid choking, take a sip and swallow of water to make sure the path is wet.
This next step needs to be done in one smooth motion: Place the pill in the mouth on the tongue. If it’s an oblong pill put it in the long way facing the throat. Take a swig of water, then keeping the chin level to the floor (not tipped up!!) swallow the pill! They go down every time! Keeping the chin level with the floor keeps the throat open to better accommodate the pill.
I hope this helps Dane out with his pills but it may take a little time yet for the tissue to remodel in his throat. Small bites of food, of course and just sips.
I know this is frightening for him to feel as though he’s choking, especially if theres a laryngospasm.
Remaining calm and holding the breath for 5 seconds may treat it. Also when that happens if he can hold his breath and put both arms up over his head that tends to add to the relaxation of the larynx.
His BMT team may have more suggestions when he checks in with them today.
One note I’d like to offer. When he’s able to switch over from mag infusions to oral, he may want to ask his BMT pharmacist if he can take Magnesium Glycinate. It’s much easier tolerated by the gut and has a good absorption rate. My Mayo Pharm was on board with my switch. The mag citrate gave me surprises I didn’t need. LOL.

Wishing him (and you!) continued excellent progress post transplant. He is still considered a babe in the land of BMT. So recovery will be a slow, but steady gain daily. He may have days he feels like a crazy puppy, full of energy and vigor but then crash for 3 days. The first couple months can be a roller coaster but the highs and lows start leveling out. He’s doing great! And Mary, so are you. Being a caregiver is a huge labor of love.
Sending you both air hugs!! Enjoy your new little grand baby and good luck with the return to the clinic today for the followup.

Jump to this post

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

mary612 | @mary612 | Jul 6 8:30am

In reply to @donnajones "Good luck to you and your husband. A friend of mine is also in the process..." + (show)

Thank you so much for your prayers. I’ll keep your friend in my prayers as well.

Please ask any questions if I can be of help as you start this journey with your friend.

Lori, Volunteer Mentor | @loribmt | Jul 23 10:52am

In reply to @mary612 "Good morning Lori, Thanks for the swallowing tips! He is already trying some of them. He..." + (show)

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?

katgob | @katgob | Jul 23 12:41pm

In reply to @mary612 "Good morning Lori, Thanks for the swallowing tips! He is already trying some of them. He..." + (show)

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.

mary612 | @mary612 | Jul 24 8:10am

In reply to @loribmt "Hi Mary, it’s been a couple of weeks since we’ve chatted. I’m expecting there’s been some..." + (show)

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

mary612 | @mary612 | Jul 24 8:15am

In reply to @katgob "Wow. Day24!!!! One day at a time works. Not all symptoms are the same every day...." + (show)

Hi @katgob
Hope you are feeling well and stronger every day!
Thank you for your encouragement and prayers. We truly believe in the grace of prayer.

He continues to make eating and moving every day his priority!

Did you have leg swelling after every magnesium IV? It goes away in a day or so wearing the compression socks and moving around, but is a nuisance side effect of the IV fluid.

Hope things are going well for you at work and you are absolutely thrilled to be back in your own home!

Mary

katgob | @katgob | Jul 24 11:58am

Mary612
I too believe in prayer. Every day. Do not hold on to yesterday troubles or mishaps. Forgiveness is good for peace of mind.
I am glad he is eating and moving. My guess is you are too!
I did not have leg swelling. I will say though, that from my 2021/22 bout with breast cancer and surgery, I ended up with a deep vein thrombosis blood clot in my right leg. I was on blood thinner for 6 months and later a bit more. Still after my last ultrasound, that clot remains, although blood is flowing. I am still slightly swollen, but since my BMT I have-not worn my thigh high stocking. Swelling does always need to be monitored by the RN, so I am happy to hear compression stockings work.
That is what i love the 1st 30 and 100 days. Successful outcomes for us are also good for the transplant team.
Home is wonderful. My sister stacked and moved items. Put 2 rolling carts in for various items. Put items with possible fleas in black bags on the patio. I miss my sweet little white cat Hazel yet am working on my Simba cat.
I hope every day continues to be better. God's grace allowed the transplant patients before us to pave the road for our turn.

Lori, Volunteer Mentor | @loribmt | Jul 24 1:48pm

In reply to @mary612 "Good morning Lori, Today is day 42! It’s been a busy couple of weeks managing symptoms,..." + (show)

@mary612

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!

Mary

Jump to this post

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??

katgob | @katgob | Jul 24 6:34pm

In reply to @mary612 "Good morning Lori, Today is day 42! It’s been a busy couple of weeks managing symptoms,..." + (show)

@mary612

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!

Mary

Jump to this post

I love your post. Day 42!!! I got my car on Day 72. It sure opened my life again and made me feel normal.
I hope you are writing in a journal. I found using "notes" in google was my daily tracker. Be good to yourself too. Caregivers need self-care.

myfablife | @myfablife | Jul 25 9:01am

In reply to @mary612 "Good morning Lori, Today is day 42! It’s been a busy couple of weeks managing symptoms,..." + (show)

@mary612

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!