Bone marrow transplants for CMML

Lori,

I live about 16 miles from the City of Hope. It looks like i will be in the hospital for 2-4 weeks and have 2 visits a week for 100 days? Complications? I walked through my past diagnosis researching my doctors and finding out they were some of the bests, connected with the nurses and asking questions. Putting concerns in the portal. If I feel good on my weekly visits, I will drive myself. I used to stay a bit on some infusion days and get food in the cafeteria. At COH we were offered a sandwich and snacks during our infusions, so I normally was good to drive home. For me Chemo did not hit me for 2 days.

I easily drove myself to all my chemo and other infusion appointment's the last 2 years. For surgeries and those things, I had drivers. Friends. My local older sister did not get a Covid vax, so my trusted friends helped. This sister did not want a genetic test. She knew 3 of her 4 siblings had the BRCA2 I had. Our younger sister removed her ovaries and fallopian tubes as i did. This sister did not and had ovarian cancer last July. I do not believe in fooling with genetics. Eating healthy, checking for additives in food and the environment is good.
This blood cancer she seems to finally get. With her cancer and 6 rounds of chemo she gets it to some degree. So, she plans to help me through this process. She is planning to move from California to Indiana to be near her daughter and grandkids, but not yet.
I thought about your young donor Lori and checked out "Be a Match". It did mention donors starting at 18 give likely the best chance for our bodies to accept their blood. I love your comments about feeling like a 20-year-old. B+ is a blood type i do not hear much. I was A+ which at the time in the early 90's was 27% of the population. A childhood neighbor lived with 3 days a week dialysis for 19 years, so looking at the donors in the beds at the Red Cross, I decided to do it. My platelets could go to anyone. I started out every few months, but in 2021 I was once again on a roll to donate more than 20 times. I have a picture on the wall there. I knew i would keep doing it till i could not. My last donation was in June. I found my breast lump and started my journey.
I saw on Be a match we possibly can write a letter to the donor. It would be checked by a number of people, but with my donations I would love to thank this young man. I receive blood and platelets through my cancer chemo journey. I cried when I got them, as I knew the love of the person donating. Movies only go so far in the couple hours of donating platelets. Love is present and gratitude that you can.

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I’ve tried several times over the past 5 years to initiate contact with my donor through Be The Match. He’s chosen to remain anonymous. During my initial recovery period I sent a little painting I did, along with a thank you note to let him know how grateful I was for his gift of life. I never heard anything back. So I may try one more time now that it’s coming up on 5 years the end of June. He owes me nothing but I owe him everything. ☺️ I’d really like to thank him in person or at least get to know more about him? Why he donated, etc.. and the fact that he’s a hero for me and my family.

It will be beneficial for you to find out the protocol for City of Hope and how they handle the stem cell procedure. It’s really great that you live so close! The first 2-4 weeks are the roughest so if you’re in the hospital during that time, that’s actually not a bad thing, especially if you don’t have a full time caregiver. You’ll be tended to nicely there and well taken care of.

Depending on the program, usually the pre-conditioning chemo is 5 days directly before transplant. For me the first 2 days were outpatient with little to no issue. Day 3-5 there’s an additional chemo added and that definitely let me know I was ‘not in Kansas anymore’. LOL. After that last session, there is usually a day of rest with just fluids being flushed through your system. Day 7 is called Day Zero and that is the transplant day. Totally anti-climactic event after all the hype! Takes about 15-30 minutes, looks just like a bag of plasma cells being infused just like a transfusion.

Having someone who can give you rides, help get groceries and such will be important the 2nd month. There can still be weakness and unpredictable days those first couple of months. So you may not feel like walking great distances if there is parking/walking involved. Just so you’re aware. I’m sure you’ll have meetings with a social worker and a transplant team to help you navigate what to expect.

You have a lovely and positive attitude about all of this! It is so beneficial to your health and recovery. ☺️

Thank you for this info. Exactly what I needed to hear. I have no doubt COH is like your hospital. A little bit possibly different, but I spent 4 days in the hospital and day another time and the nurses through my 30 infusions of various items. I figure not to worry before and let each day unfold. If they keep the nausea away and keep my bowels moving, I am good.
If April is a go, March 5th I will get more info.
I see my NP in oncology the 20th. She will see all that has transpired since I saw her in August. She is a new mom.

I wanted to update that I got a call from the nurse in the transplant unit 2 days ago. Near the end of my work shift. Fifteen minutes. Seems April 1st was the day I am to start. 5 days of Fludarabine where i get the infusion and go home. I enter the hospital on the 6th day to receive Melphalan. One day of rest and the Fresh PBSC infusion.
two days of rest then Cyclophosphamide for 2 days then begin Itacitinib 200 mg for 100 days. The next day i add Tacrolimus until Day 65
Day 29 I go home to begin 2 day a week visit back to COH for weekly draws.

So I listen and am in a bit of shock. I continue my day at work doing work. I text me two sisters and head home slow. I get home and read the papers with the information the nurse sent. What concerned me most was the caregiver paper. 24-hour caregiver for 100 days? How in the world will i find someone or more than that to help. Not until i read this did, I realize what i faced. I used to think my end of life would be difficult with no children or a husband. I did think I could have had a husband and kids that were unable to help for whatever reason, so it seems I am at that place. I asked my local older sister if I could possibly stay with her or her with me when possible. Yesterday she said i cannot stay with her because as i have mentioned, she too is being treated for cancer, ovarian. Her chemo is done, but she says she cannot be around sick people and she is still not well. I must say I am not surprised. Sadly, that is just how my family is. My older brother could never help as he had real trouble being there for our mom as she was confirmed to her bed in our family home the last 3 months of her life. The younger brother is estranged. So that leaves my youngest sister who lives in western NY. She works full time. I told her i will fly her here if she can work a week or so in. She of course will come here.
Tuesday night i emailed the nurse Mary back and said i had some questions. In the hospital I need a 24-hour caregiver with me and a few other items.
Yesterday I volunteered with my local animal rescue and chatted afterward at McD's with my friend who volunteers there. Talked about it with her calmed me more. At home I messaged again to Mary that i am most concerned about the caregiver portion. I am finding thinking about it how daunting it could be to line up 24-hour caregivers. I have a number of friends I can ask to help on a rotating basis. They are retired and some are married. At the moment, I have not alerted them. I said to Mary on this email that this one issue alone may cause me to have to postpone the transplant. Also, that April 1st is too soon to get things in order. My older sister who could help at the start is visiting her daughter till April 13th. The same sister who cannot have me stay with her. Mid-day yesterday I messaged Mary to say I checked with one local sibling, and she said she cannot let me stay with her due to her own cancer journey at COH that is just winding down. Therefore, i do not family that can be there 24 hours. Also, I cannot not believe in the 15,000 transplant COH has done, no other patient has had the same issue. She final responded later in the day saying she is notifying Dr. Salman Otoukesh about the social work team to give me a call. I then went to work mid-day and got most work done for the day.
Saturday I am working with my sister to get my place into shape for when the transplant actually happens. Yes, the same sister I spoke about. This sister has never had a full-time job, so time for a lot of creative pursuits. Today she is retired from it all, so has walked through her cancer journey from July of 2023 until now with all days open to assist in her own recovery. She is super anxious to help me.

Oh yes, on the 19th i received this call later in the day, I had a morning appointment on site at the COH. I had been notified sitting in the dentist chair the 19th that my NP was not going to available, and they were to find me someone else. It was interesting as my dentist let me answer the phone once i saw it was the COH and she just waited. The replacing of my crown then began when i hung up few minutes later. My dentist knows of my journey as cancer/ chemo and meds can affect the teeth. While i waited the next hour for my new crown to be made, I got a call back from the COH. I have an appointment 1 hour later with a new DR. The next day i found out my favorite NP, the only person left that treated me on my active Breast Cancer journey is not coming back after having a baby. What??? I was so excited to talk with her about my new path as she would have been right on target helping me as always. My oncologist to worked for went to Cedars-Sanai, so I usually say her for the last year every 3 weeks. She was on pregnancy leave since August. All I can say is change is rough sometimes. Connections can be lost and just right now I am feeling that loss. The new Dr. they assigned me has been at COH since 2023. Her medical degree earned in 2017. She did not really read my chart, as there are lots of pages. Who has time. I was seeing her for my hurting left arm. She saw i was diagnosed with MDS and felt that a wait and see is a good path. I had to tell her that my genetic results with BRCA2 and the findings in the bone marrow have me not wanting to wait and see. I believe then she looked at the results with that Dr. and said she would defer to their department on that. She did a could more checks and sent me off to get an x-ray of my arm. I am not sure about her. My younger sister in NY said to give her a chance.

@katgob I was concerned about your lack of full-time caregiver after your SCT. It’s pretty much standard protocol for every clinic to have 24/7 care for about 100 days. The first 2 months are generally the most important. But you’re right, with so many people getting these transplants there have to be others who don’t have full time family so I wonder what they do. Hopefully the social worker has a few options for you! Don’t lose hope…these things usually have a way of working out! Keep me posted, ok? Sending a hug!

Thank you.
I truly have let go of any worry. Once I took a day to think about it, I knew they have heard this before. I had really hoped my sister could work this out and help me. I was very disappointed even as I realized I knew she would not. Maybe her son and husband saying no?
I know the Dr had not confirmed times with the donor yet. I also know it is my choice. I look forward to the social worker from this unit calling. I feel like I would rent a place near the COH and hire a caregiver. My brother knows the company we hired for my mom.
I thought in the hospital they check on us. Which day do I need someone there 24 hours. Day 9?
For me, this is a burden. I am checking with a friend. Talking with her to reason this out. Do I have a friends house I can stay at?
Tonight I will feed my cats and do a little more deep cleaning at my house.

I finally got a call from a COH social worker. As she spoke, I realized this journey will be tough. A caregiver if i end up needing to hire is $58, 000 based on the caregiver list she proved and the ones who do 24 hours.
She was saying to ask my sister in NY to us fmla. Possibly NY has family leave act. Oh my. My sister works full time and more on weekends. Maybe 1 week or 10 days from her. My older sister who lives local, of course possibly her family said no I cannot stay at her house.
Wow. This was not something I realized would be happening when I first heard the diagnosis in late September.
I am again letting it go today. A very good friend I hope to reason this out with has not responded to my text yesterday. I was to receive a call the 24th but have not from her. We have another friend with a heart attack scare, getting a pace maker, and another walking through dementia in her mid 70's. My friend may be real busy.
The social worker was young. I felt no better after speaking with her.
Off to work I go. I did tell this sw to find out if the Dr has info on the donor. Also April 1st was never asked about to me. My lack of a caregiver may cause me to put this transplant off for a good while.

I add that this Friday zoom meeting is with between 3- 8 women. We talk about God, turning our problems over to him and prayer and meditation as a daily use. A good friend invited a number of the women she felt would enjoy this topic and the new friends. This friend passed 1 year ago. We all speak with love about her.
I told them I had joined my good friends online support meeting and chat her to read my prior phone text please. In that meeting I chatted my need for caregivers to her.
Well, through a few texts over 4 hours, she called to say I could stay at her house. A blow up bed would be added to the house, so all 3 would have a space. Logistics would be figured out closer to my date of transfusion. She is 10 minutes from COH. She is my link to a few other ladies with extra rooms. If I need a week or two at each, that would work. I just thought about a bunco friend who I may ask to be on my list.
I figured it would be far less stress to stay with a few others and have them down on the COH form as the fourcthey request. I can wear masks at their home and they do keep their homes rooms clean.
I speak to the Dr. On the 5th so he may have an update from the donor on if and when he is available. I had spoken to the transplant nurse a few weeks ago and the social worker last week. Both of those are part of the transplant team.
My BC journey started in July 2021, chemo in August, removal of the tumor in Feb of 2023. Getting covid in Jan 2022 caused my surgery to remove the chemo shrunk tumor to be put off till Feb. A 2nd surgery till Dec, happened as I had a deep vein thrombosis, aka a blood clot, in my upper thigh. I learned here after 6 months of blood thinners that a body breaks down its blood clots. I have now had that blood clot for 2 years. It is not fully open, so use of a thigh high compression stocking is in use.
This journey continues.

Oh gosh, you’re sure having to jump through a lot of hoops to make this happen! I’m so relieved that your caregiving plans are starting to take shape. There are some critical steps to ensure your health during your recovery time such as avoiding exposure to illnesses or things that your immature immune system won’t be able to handle for a while.
I have a very good and comprehensive guide for you to read through. It gives details of the transplants, what to expect, recovery, recovery at home, infection control and links caregiver resources.

~Caregivers for BMT, CAR-T, and Hematology Transplant Journey
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/
There’s a menu listed in blue.
You’ll see Allogenic Transplant-which is what you’ll be having.
Very important will be the Infection Prevention! You’ll need to review that and make sure that whomever you’re staying with has taken all the precautions.
You WILL be expected to wear an N-95 mask for several months because you’ll be highly susceptible to viruses, bacteria, molds & fungus…. It’s all covered in this guide.

You’ll learn more with your appt on the 5th! I’m sure pulling for you that this goes smoothly. Please let me know what you find out!

Lori, Thank you.
As I read through the caregiver the first time, I see a could ladies who could cycle in for the weekly visits. Maybe get my sister to come and drive me.
I will get the N95's ordered this week. Also print the info to share with my friends.
I will know more Tuesday with the Dr's appt.
I truly appreciate your knowledge and sharing.