Mini vs. full transplant? Decision???

[Lori Patrick]

It is Day +29! woo hoo!!!! We went to the doctor yesterday and everything went so well. I am getting such good news and I need to remember who to give my "thank you" to more often.

Blood counts are steady freddy - right where they should be. Dr. Nelson told us that on day 9 they did a bone marrow biopsy (for the study) and he had NEVER in his career seen one as good as mine. He said it was just like normal bone marrow! Any remaining cells of mine are probably "bossing" around my little brother's cells: Hurry up,,, look in there,,,, now look in here,,, there's a bad guy,,,, go go . LOL Tracy will get a kick of out that one!

I go to a pulminary doctor Monday as a check however I was at 100 saturation without any oxygen yesterday. Hopefully that is remedying itself.

I don't see Dr. Nelson again until next Friday. (The gap in the appointments are indicative of the good test results.)

Thank you all for the cards, lotions (wow do I need them - my skin has been sucked dry), yummy food, and mostly for the prayers. Throw in an extra prayer for Jim who has the challenging job of caring for our meals, home, me, keeping my 50 or so pills in organizers for me, etc. Good thing he loves me!

Blessings to you all and I'll write more later! Love, Lori

[cathybee1]

Wow, what great news. It's wonderful to read about your good results and your very attentive caregiver and friends. Keep us posted.

[Lori Patrick]

It WAS warm a few days ago, right????

I went to the Dr. last Friday and my liver numbers were back where they should be. However my kidneys were not so hot. They ran a bag of fluid through me and took me off cyclosporin. I asked Dr. how the other people in this trial were doing in and he said that I am in first place. He was very impressed that I had an abscessed tooth and still kept improving. That made me feel good. I had labs Monday and my kidney number is all happy again so..... they put the medicine back to where it was. Do you know how hard it is to drink 8 glass of water a day?????????? I always thought I drank a lot - but not that much! smiles

This is day +43 and for the most part I've been home and to the clinic/dr. I wear a funky mask that I call a duck mask! Pretty! My hairs are really showing more - dark too. hmm With my fatigue and fear of germs I am just fine at home.

Please keep our family in your prayers. Blessings, Lori

[Gloria J]

So good to hear great news!!

Keep improving,

Gloria

[Lisa Z]

So glad you are doing well so soon after your BMT.
What trial are you on, if I may ask?
I would be very interested to look at the requirements... and where did you have it done?

[Lori Patrick]

Lisa, Maybe "study" is a better word? I had Bacitrum (don't have paperwork right here - spelled wrong likely!) given to me on Day 9. The goal of this study is to see if this method can ease or eliminate graft v. host. I had my transplant at Indiana University Hospital. The "B" drug is not new - it is just the timing that they are studying.

Blessings to you. Lori

[Lori Patrick]

Hi all. It is spring like here and I love it! I am at day +72 and I feel almost as good as I did pre-transplant. I am seeing my dr every month now but have labs every 2 weeks pursuant to the trial I am on. I received the ok from my dr to ride on the motorcycle and to go to our campsite rv trailer! I was afraid of the campsite but the dr said to just stay our of the main stream of smoke if others have camp fires. I am so happy to be able to plan a week trip to our rv to just read for a week. I have not been able to focus enough to read since the transplant but the rv is an environment that is condusive to reading since that is what I always have done while there. I had a bit of kidney fits while on gen graf but they have now changed me to a new drug and all is well.

I continue to take morning naps but have begun getting bored in the afternoon. (good sign!)

I do have another challenge hitting me since my 27 year old daughter and mother of my 1 year old granddaughter was diagnosed with stage iv estrogen based breast cancer a few weeks ago. She has a large tumor in her breast and one in her spine. She is undergoing chemo weekly for 6 months and then they will radiate her back. There is a pill she can then take that will hopefully prevent the cancer from going to vital organs. The Dr told her the life span is 3 years. I hate it when they do that. I have every reason to believe she will make it much longer than that since we believe it has been on her spine for a couple of years and has not moved. I will be helping her and my granddaughter so it is timely that I am feeling better. God knows what he is doing.

Please pray for my family; for my continued success and my daughter. Hugs to all, Lori

[Neil Cuadra]

Lori,

It's great to hear that you went camping. It's the very definition of having a life turning back to normal.

I'm glad you are so positive about your daughter's treatment. Still, her diagnosis must have been quite a shock. It's as if your family has been struck by lightning again.

[Greg H]

Originally Posted by Lori Patrick

I am so happy to be able to plan a week trip to our rv to just read for a week. I have not been able to focus enough to read since the transplant but the rv is an environment that is condusive to reading since that is what I always have done while there.

Lori,

I know this feeling well. We have an old Airstream, and, when we're at the beach in it, it's like a cocoon. Best reading environment ever!

I'm real sorry to hear about your daughter, but grateful for her that she has a Mom that's been through some pretty scary cancer stuff and can guide her in her fight.

Take care!

Greg

[Lori Patrick]

Hi all. I had my +100 day biopsy and it looked normal!!!! Those are the preliminary results from the Dr. looking under the scope, however they say the lab results are nearly always the same! I am so very thankful! I have had a bout of diarhea that put me in the hospital for 4 days last week, but with 20 mg of prednisone I believe that is behind me. The Dr said it will take 1-2 weeks to get the results as to % of me v. my brother's cells.

For now, I am feeling great and am so happy. Thank you to all of you for your support, nice words, prayers. Please continue to keep my family in your prayers since my 27 year old daughter has terminal breast cancer (estrogen based) and if you have any knowledge of good hospitals I can check out for clinical trials down the road for her, drop me a line.

God is Good. Hugs, Lori

[Neil Cuadra]

Lori,

Thanks for sharing the good news about your 100-day biopsy. Hooray!

There's a lot more support out there for breast cancer patients than for MDS patients, since breast cancer is unfortunately not rare. ClinicalTrials.gov is one of the best examples.

Please let us know any way we can help you, your daughter, and your family.

[squirrellypoo]

Oh, what a bittersweet celebration, Lori! I wish you and your family all the best as you and your daughter struggle on.

[Al's Wife]

Lori,

I'm glad you are doing so well. My husband was also given a "terminal" diagnosis but another one of his doctors told him that the doctor was wrong to give him that kind of a prognosis. He said - and I quote - "We get a medical degree; not a crystal ball."
Just know that you and your daughter are in our thoughts and prayers.
Linda

[Lori Patrick]

Thank you for praying for my daughter. She has had 3 chemo treatments and feeling worse with each one. It's hard to watch your child go through this. I can't get past the Dr saying survival is 3 years when she has a 1 year old daughter that she dearly loves.

My BMT showed 95% my brother and 5% me. So I was taken off th RapImmune and weaning off prednisone so that hopefully this will allow his cells to gobble up my remaining cells. Amazing. From my last blood work Dr thinks my cells are gone!

Again, Prayers for my daughter are requested. Thank you!

[Lori Patrick]

Hi all. I am almost 8 months out from my transplant! Began showing liver issues - had biopsy and it was back and forth as to whether it was gvhd or toxicity from meds. Doc changed meds and put me on prednisone. My husband and I were to head west on our motorcycle and wouldn't you know the day before we were to leave I looked in the mirror to find splotches on my face, tummy and back! grrrrrrrr Had to delay trip until I saw Doc. Biopsy showed it is gvhd. I was on 40 mg of prednisone (nasty stuff ) and used a lotion on my skin. Doc believes my liver is gvhd as well. Numbers aren't "that" high, and skin is not bad so he considers it mild. We had a nice trip on the bike EXCEPT it was over 100 degrees and Kansas has to be a sample of what hell will be like! I ended up getting my granddaughter's cold and was semi sick the whole trip! bahhhhh But we enjoyed getting away. Last year I thought I'd never be on the bike again - but I did ! A couple of days ago I began getting sores in my mouth so I am gargling some steroid elixir 4 times a day. The elixir says it will lower my immune system - the prednisone says the same. I'm staying in for a while. Plus I have been very tired probably from the meds. OH and they say you get "moon face" with prednisone........... ha.............. my face is round, shoulders are huge, back is huge and I do not feel very pretty at all ! I have begun to wean down and am currently at 25 mg of prednisone. I only sleep a couple hours at a time with this. I liked being on 1 mg of prednisone - it gave me some umph - but the higher dose is not so pleasant!

Over all, I am doing good. I just thought I'd share my status with you all out there.

Please keep my family (especially my daughter, Angela) in your prayers as she begins 6 weeks of radiation next week for her breast cancer. Hugs and Blessings for all. Lori