Preparing for Bone Marrow Transplant: My mind is racing

If I can be of any assistance, please let me know.

Hello, I couldn't help seeing all the wonderful praise given for great hospitals such as the Mayo Clinc and it makes me a bit jealous. I am currently on watch and wait with my CLL and have a great oncologist treating me, but I live in a very rural area that only has a small county hospital nearby. The larger ones are all hours away. Am I safe letting this small hospital treat me when the time comes?

Hi @hababeck. Mayo has a world renowned reputation for taking on some of medicines most challenging cases with world class physicians. But that shouldn’t have you feeling any second doubts towards your great oncologist and your local hospital!
Yes, I was fortunate enough to have my bone marrow transplant at Mayo-Rochester. But my treatments for an aggressive form of AML was administered solely by my amazing hematology-oncology team in my home town at our hospital. It was so reassuring to hear from my transplant doctor that the treatment plan my local doctors had me on was exactly what he would have suggested…he wouldn’t have changed a thing.

So basically, in my case, had I been referred to Mayo with AML, I likely would have been denied because I was receiving appropriate care on a local level. Not everyone needs to be seen at a Mayo Clinic, or MD Anderson, or Cleveland Clinic, etc.. The transplant was another story. That is a procedure that would be better done at a larger institution with deep bench of specialists. However, my local Hematologist oncologist is still the doctor who runs followup blood work for my transplant team between trips to Mayo. It’s a win/win to have my home team!

CLL is often very slow to develop and patients can go for years without any treatments. When and if it becomes time to initiate medical intervention there are options for treatments to slow the progression. CLL remains one of the more treatable forms of leukemia.

So I’d encourage you to just keep on living your life and take this one day at a time. It sounds as though you have a really wonderful team in place and they’re monitoring you. Don’t let these conversations plant any seeds of doubt. ☺️

How was your diagnosis discovered back in 2017. Was this just from routine blood work or were you having any symptoms?

Hello all,
I am here!! I' been here in the hospital at the Mayo Clini, Jax.. I'm set for my Transplant this Thursday. I'm getting increased doses of Chemo every two hours. I'm snacking on healthy foods and drinks. That seems to be working to keep any vomiting from happening. My head is no longer racing because the Team here is wonderful. Do worries.

I have housing setup at the Hope Lodge. That portion is all set. Weve had to stay at the Holiday Inn in the area. I've stayed at 3 different holiday inns. Do Note that the two Holiday Inn Express offered free breakfast. But the Holiday Inn did not. However, we needed to add two nights to our stay at the Holiday Inn. Once the front desk found out we were Patients at the Mayo Clinic, they gave us a discount. So, now my husband is here staying in the room at the hospital for the next two nights with me, then he will check in at Hope Lodge.

Food would be a big expense, but now that I'm in the hospital. I'm getting whatever comes with the room. Since I have LapBand, I eat small protons. That leaves a lot of food for my husband able to eat. Also, they've told us after I order my meal, I can order every 45 minutes to the kitchen. Of course, I would never do that. The Hospital unit have nice healthy snacks also. Hope this helps.

Hi @avaleir! I’ve been thinking about you and expected you were getting close to Day Zero! So August 1st is your big Re-birth day! This certainly isn’t the way you anticipated spending your first year of marriage, but hey, this gets the ‘sickness and worse’ parts over in your marriage vows…(sickness and health, for better or worse) 😉 Joking aside, I’m so glad for you that you’re able to get the transplant taken care of and onto recovery!

I think I mentioned before that @katgob had her transplant just over 100 days ago @mary612 husband is coming up on 50 days, I believe. @alive @edb1123 @kt2013 @jenmkr63 @tkidd51 along with myself, are just a few of several members who have had transplants over the years. So don’t hesitate to ask us anything that may ease your mind or your journey!’

Being at Mayo, I know you’re in the best of care. Your team will do their ultimate to keep you comfortable and provide everything you’ll need for your successful outcome.
If I remember correctly, the kitchen, at least at Mayo-Rochester closed after 6:00PM. I had meds to take in the middle of the night and couldn’t eat the pudding and other goodies in the transplant fridge (lactose intolerant) so I’d order extra banana bread to take with my late night meds…so plan ahead if you or your husband want snacks! 😉

When you’re up to it, please keep in touch. Our journeys become survival guides for other newbies who are going along the same path. Sending an air-hug!

My birthday is 9/14- 1 year post transplant. I’m feeling great just some mental things going on. If you have any questions please let me know.

After several routine blood tests by my local physician over a one-year period she noticed I consistently had high white blood cell counts she had previously though might just be from an infection or minor illness. That was when she referred me to my current oncologist who has a brand-new office with a large number of nurses and assistants who are great.

From what I’m reading here, you already have a really knowledgable and attentive oncologist and staff. I think you can feel pretty comfortable with not worrying about being seen at a larger facility.
Finding CLL with routine blood work from an annual physical isn’t uncommon. Kudos to your local physician for spotting the changes. You’re well taken care of in your rural community! That’s really refreshing to hear. ☺️

I am day108 past transplant. I was in a research study for GVHD and took a pill usually given once side effects happened, but i got it day 5-100. They check my blood now at 6 months, 1 year and at my next BMB at 6mo. and frequently going forward in time.
I want to say the hospital stay is the best. About a week out of my 24 days there, I ate little. The menu was honestly delicious. Snacks too. COH in Duarte California is my spot. May and MD Anderson are two I think COH is like for sure. COH does require in hospital stays following the transplant on the 6th floor. Dedicated to us. An around the 2 sides of the 6th floor they have marked exercises they want us to do. I did my best most days. I got to meet some nice transplant patients, and many had nearly the same transplant day. Lori, our mentor, has said it is really anticlimactic. For the research study I had 2 extra chemo doses of Cytoxan. Those two did not cause my hair to fall out. The melphalan before the transplant did. My hair is barely growing back. I will not the color is golden looking. I had red hair all my life. A transplant means I could have any color. Maybe my color?
Take each day one at a time. In the hospital I had an RN nearly 7am/7pm each day.
hababeck- I love your local physician looks at blood results. Pays attention. Wonderful too that they have an oncologist with great nurses and assistants. Being heard is so important on this journey. Keep us posted on all that goes on.
Our paths are not the same, but some side effects, and feelings are.

@avaleir
My husband will be admitted to Mayo Florida on August 14 for his SCT. Day 0 is Aug 21. I hope all goes well with your infusion day and all the +days thereafter.