hello from madubois63 - update

[madubois63]

Hi everyone - I am sorry I haven't been in touch for a while. I did not send out Christmas cards for 2008. If you got one, it was truly a miracle - feel lucky, lol. If you saw/have seen me since then, wow! Life has been CRAZY to no end. Here is an update since I came back from my Texas trip last Christmas time.

On the last day of my amazing trip, I noticed my eyes were yellow. I called the cancer center and was told to go straight to the ER when I got back to NY. I went home, unpacked, then went to the hospital. I'm always trying to avoid the hospital but I went. I had severe graft vs host disease of my liver (a rejection of the transplant). I began treating it with phylabotamy (taking blood out weekly) and high dose sterroids. This started working but then a small amount of bc was found in the lung again. Started treating the bc with Herceptin and Fasalodex. This was also working but then my hips started to hurt and I scheduled hip replacement. Cancelled the early June scheduled surgery because I had pneumonia, and I also needed to be at my daughters graduation. I was sick but I made it to her prom and graduation - a huge milestone for both of us. Then I went back to Stony Brook and had my left lung drained. 2 weeks later, I was back in Stony Brook draining the lung again. Felt better and went on, but the hip really hurt and I tried acupuncture (friend from high school - offered her accupuncture/friendship services free). Things were good, then things were slowly getting worse. I used the cain and then started using the walker in the house. Then came the wheelchair in and out of the house. Walking became very dificult. My dad and son were taking me the bathroom and I fell out of the wheel chair. The next morning, Liz (best friend), my mom, kids and dad were all there to call the ambulance. My doctor was contacted and they brought me to Stony Brook kicking and screaming. I could not walk at all and the pain was agonizing. I had taken so much meds I didn't know which way was up. I was under a mix of morphine, dilautin and a few other pain medications. I do believe I was seeing things at one point. Now, in between all this, I had to get my kids ready to move out for school and get tuitions paid too. Shannon moved. Dan stepped up and was great. He drove his sister to the U of New Haven and got her settled in her dorm. During the week, Shannon stepped up and did shopping for both of them. She had a busy first few days with all the school programs and my sister filling in for the family luncheon. She had fun. I think everyone is supporting everyone else in a new way. We are growing up. Dan left the following week and my mom/yia yia helped him (he hates shopping) finish up. I was having anxiety attacks, but got over them real quick. Back to the hospital...They put me on antibiotics for a while and that helped clear some things up. I went home, and then I nearly killed myself again. Too much pain and too much pain medication...I went back to the hospital again for 79 days. During that time I got a morphine pain pump implanted in my tummy area, a new port, they worked on my lungs and nearly had me dead and they found a very small brain tumor from the breast cancer. They zapped the tumor that was found very early and was very small and it is gone. I am being monitored very carefully. I also have breast cancer that spread to the lungs (once again). I get Herceptin and fasalodex every three weeks for that. I also had:
MRI: (they knocked me out cause of the pain, then cut off my pink bracelet and used my left arm for blood pressure while I was a sleep. When I woke up I could see the indentation marks of the blood pressure cuff. I was mortified and angry to no end. I called the head docs and made then give me a test to rule out lymphadema and also to do something so that won't happen again. I now use a pen or marker and write on my arm not to use it under any circumstance.
CAT scan: for hips
dopler tests: to rule out clots/lymphadema in left arm
electrocardiogram: heart tests to make sure I was not going to have a heart attack
x-rays: to see fluid levels in lung
draining left lung: they took 1500 cc's - that's like a bottle and a half of pepsi at the pizzeria
physical therapy: to strengthen my legs and walk again (stood up and took 2 steps for 30 seconds each time)
blood work: to find source of infection
remove the port: that ended up being ridden with infection
bi-pap machine: to help my lungs get carbon monoxide out (they wanted to intubate me and asked for a dnr - they are such idiots. I refused!!! I'm fine. They scared my family for no reason.
respitory therapy: oxygen, massage and breathing exercise.
So now I am home and bed bound. My hip pain is under control, but I can't walk. I took very high does of steroids and that killed my hip bones. They are now pretty much gone. I am doing physical therapy to gain strength in my muscles and treating my lungs. Once the lungs are strong enough I will be able to get the double hip replacement. Sounds like fun? I now have wonderful, wonderful aides that take care of me during the day and night. My day aide works 12 hours and she is amazing. I wish I could clone her. So that is where I am at. If you get a Christmas card this year, It will be a surprise to me. I am inundated with paperwork for medical care and always calling someone about something.

I hope that all of you have had a better year than me. I know a few that haven't and I am praying for you. I love you all and wish I could be there for you and do more for you. Marry Christmas, Happy Hanukkah, Happy Kwanza and Happy New Year. My love and prayers go out to you all...Maryann

[MJo]

Happy Holidays to you, dear Maryann. Still Kickin!

[BonnieR]

You are an amazing woman. You always keep the faith. Something about mentioning Christmas cards really touched me too. I know so many healthy people who "just don't feel like sending them" whereas you would welcome the chance. And apologize for not! What spirit!

[naturaleigh]

Maryann,

I am so sorry to hear all that has been going on with you. If anyone should be cloned, it would be YOU!! You are one amazing person!!

I hope 2010 is a much better year for you. Have a very wonderful Christmas!!

[ElaineM]

You are an amazing woman !! You have experienced so much and you are still thinking of us. You keep going no matter what !! You are one of our role models. You are fabulous !! You have a strong spirit and I am grateful for that.
Have a terrific Hanakkah, Christmas, Kawanza and New Year. I wish you a healthy 2010.
Keep taking great care of yourself. I will think of you and say a prayer for a healthy 2010 and beyond.
Mele Kalikimaka !! Hauoli Makahiki Hou !! from Hawaii.

[Jackie07]

Maryann,

How wonderful it is to hear from you! How wonderful is your writing! You wrote like a pro - is 'unflinching' the word?

Thanks for sharing your amazing spirit. Happy 'Holidays' to you, too.

[Shobha]

Wishing you a much better and healthier 2010!! It is way too much to go through in a year. You must be very strong.

hugs,
shobha

[Lani]

I posted this about a week ago for you...hope it turns out helpful in some way!


Lani
Senior Member

Join Date: Mar 2006
Posts: 2,993
madubois thought you might find this interesting
seems the donor and the recipient need to take statins for the best result:


Contact: Dean Forbes
dforbes@fhcrc.org
206-667-2896
Fred Hutchinson Cancer Research Center
Cholesterol-lowering drugs also may protect stem cell transplant patients from GVHD

SEATTLE – Cholesterol-lowering drugs known as statins are among the most prescribed medicines in the U.S. Now a new study by researchers at Fred Hutchinson Cancer Research Center indicates that statins may protect stem cell transplant patients from one of the most serious complications of the life-saving cancer therapy: graft-versus-host disease, or GVHD. The findings are reported in the Nov. 4 first edition of the journal Blood.

In a retrospective study of 567 patients who underwent hematopoietic cell transplantation from matched sibling donors between 2001 and 2007, patients whose donors had been taking statins at the time of stem cell donation experienced no severe acute GVHD. About 15 percent of the stem cell donors in the study were taking statins at the time of transplant.

Normally, between 10 percent and 15 percent of transplant patients would be expected to develop severe acute GVHD, according to the study's senior author Marco Mielcarek, M.D., an assistant member of the Hutchinson Center's Clinical Research Division.

No such protection from severe acute GVHD was observed if only the patient was taking a statin, according to the study. There was some indication that protection against severe GVHD was even stronger when both patient and donor had been on statin medications, however the number of patients in this group was too small to be statistically significant.

The researchers also found that only those transplant patients with statin-treated donors who received cyclosporine-based immunosuppression therapy after transplantation were protected from severe GVHD. Patients with statin-treated donors who received a similar drug, tacrolimus, did not experience the same GVHD-protection. The study also found that the greatest statin protection occurred against severe GVHD of the gastrointestinal tract.

GVHD is a common side effect in patients who receive blood stem cell transplants from related or unrelated donors. It occurs when the transplanted cells recognize the recipient's tissues as foreign and attack the tissues. This can cause a variety of problems, including skin rashes, diarrhea and liver inflammation. Acute GVHD often occurs in the first three months after a transplant and can lead to mortality as high as 50 percent if it is severe. It can be deadly because patients require more immunosuppressive drugs to treat it, which can trigger a cascade of complications such as secondary infections.

Mielcarek, first author Marcello Rotta, M.D., a postdoctoral research fellow in the Hutchinson Center's Clinical Research Division, and colleagues undertook the study because previous research showed that statins have anti-inflammatory effects and have been found to improve control of other inflammatory diseases such as rheumatoid arthritis. Recently, studies using mouse models of stem cell transplantation have shown protection against lethal acute GVHD when the donors and recipients had been treated with statins before transplant.

The exact mechanism of how statins protect against GVHD is not known.

"In the literature, a multitude of possible mechanisms are discussed by which statins may influence immune function," Mielcarek said. "One is cell adhesion – the stickiness of cells that influences how donor T cells that cause GVHD can migrate to certain target tissues. Another is how statins interfere with intracellular signaling in T cells. Statins may dampen the activity of allo-reactive T cells and prevent them from initiating the inflammatory cascade that's required to cause GVHD."

Grants from the National Institutes of Health and The Dana Foundation funded this research.

Blood paper, "Donor Statin Treatment Protects Against Severe Acute Graft-Versus-Host Disease After Related Allogeneic Hematopoietic Cell Transplantation,"

[PinkGirl]

They wanted a DNR Wow, they sure don't know our
Madame DuBois!!!! You keep on keeping on Madame.... you
will master this just like you've mastered everything else
that's been tossed at you.

[tricia keegan]

Thanks for the update Madubois and sending huge hugs your way

[Bill]

Madame Dubois, you are the most amazing woman. One of these days I'm gonna have to swim across Long Island Sound and whisk you off to lunch. Merry Christmas to you and yours!

[Rich66]

Ah yes..the DNR. After shepherding my folks through numerous medical crossroads, I've begun to refer to this as "The talk". I can almost smell it coming. It usally starts with "You know, Rich..." So far it has happily ended with "I'm surprised.."
But Geeze, Maryanne..they should have your her2 summary to guide their judgement: Energizer cancer bunny extraordinaire. One suggestion, if the morphine sontinues to be needed, consider adding in a little Relistor(MNTX) or celebrex.

[Mary Anne in TX]

Hi Maryann! It's wonderful to hear from you, but your story hurts! Yikes, what a year you've had. Thank goodness you're the fighter, superwoman that you are. And your kids sound like they are doing terrific. They are so like their mom! Have a super Christmas and God bless ya girl! ma

[michka]

Maryann, so happy to have some news. You went through so much. It's incredible how strong you fight. And you are a winner. This was a rotten year for you. You are soon getting rid of it and I wish with all my heart that 2010 will be a very positive year for you. You deserve it. Michka

[dawn]

You are such an inspiration to me!Keep it up.

Dawn

[StephN]

Dear Maryann -

A BIG HELLO from the gang here in San Antonio. We miss you, but there is a big group and we are covering the bases.
Tiptoe and friends are here as well, and all are sending a huge group hug and masses of energy to you.
Will post a pic when I can.

Into each life a little rain must fall, but we know it will dry out soon. You know what I mean by that.

Keep up the physical therapy.

[tricia keegan]

Maryann, how wonderful to hear from you but I'm so sorry to hear you've been through so much.
Despite it all you still shine through your posts as the amazing survivor you are!
I truely hope you have a happy Christmas and the new year is kinder to you

[nitewind]

Maryann, my oh my....I just don't know how to respond. I'm so, so glad to hear from you but what a devestating year you've had. My goodness, woman, where do you get the strength?
You have a great idea about writing on your arm, I can't believe that they actually removed your pink band! I'll bet you really let them have it!
I want you to know that you are always in my thoughts and prayers. Praying especially hard for a wonderful 2010 for you.
Please, stop in when you can, you have been so missed, we love you.
susan

[Faith in Him]

YOU are just AMAZING.

[WomanofSteel]

Maryann, thanks for the update, although I am sorry to hear that you have been having such a crappy time. It sounds like you have a lot of love and support on the homefront and that makes a world of difference. You never cease to amaze me. Your strength and determination are an inspiration to us all. I am praying that the coming year brings improved health for you. Merry Christmas and Happy New Year! Hugs, Jacquie