Biography

I was leading a very normal life, raising my 3 children after a divorce in 1986. I was working 2 jobs, and never getting enough rest. Fast foward: I was feeling much more tired that usual, running low grade fevers then it got to the point I KNEW I needed an EVALUATION. I heard the words no one ever expects,I had LEUEKEMIA and told that I had 3-5 years to live…What? DId I hear him right? What about my children, which at this time were 8, 10 & 15 years old. All my children were imediately tested as possible bone marrow transplant donors though none were a match. Though, I was warned beforehand, the chances would be slim. But, at this point slim was something. They started me on a drug to elevate my stem cells so they could do a stem cell harvest, which after 5 days of daily injections of nupregen and daily blood tests I was ready, so to phresis I went. Though it wasn’t unpleasnt at all and to this day my stem cells are frozen in the lab of the Cancer Center in the bad fortune that the leukemia would go into the accelerated phase, they would transplant them back into me. Sound simple? It’s not. It is extremely risky as a bone marrow transplant is. But, we continue onward. Right? I continued on this ugly drug named Interferon & Ara-C, which kept the Leukemia from progressing though I was always sick and in & out of the hospital. On a routine visit to my oncologist during an exam he asked me how long I had this lump, startled, I asked what he meant, he showed it to me where it was actually in my right axillary and very deep. He said that he wanted me to see a colleague that was chief of the Breast Center. He called him right then and I was sent over. I couldn’t hardly walk thinking this had spread to my lymph nodes. This great surgeon attempted several times to perform a needle biopsy, but it was too deep, in the office with no success and scheduled surgery for that next morning @ 6am. That day my dear Father took me along with my Pastor, I signed all papers that would be necessary to do whatever was needed. Then we prayed. When I awoke, groggy, I was trying to feel if I still had a breast but all I could feel was heavy bandaging and a bulb syringe for the drain. The surgeon had talked to my Father and told him that I was extremely lucky that it was only heavy fibrocystic tissue. So, very releaved and happy to go home, I had no pain for I was so overwhelmed with joy I couldn’t feel a thing. Six months later, my Father died very suddenly. I was devasted. two months later during a routine exam another lump was again found in my left axillary, though this time I was much more prepared, though I didn’t have my Father to comfort me. He was my rock. But once again I feel as though I dodged a bullet for I had the same diagnosis for which I was very thankful. That summer I noticed a scaly patch on my forearm which my oncologist wasn’t too concerned but thought I should see a dermatologist where he took a biopsy and yes, it was cancer. If you have done the math, about 8 years had already past. What did that Doctor know????? We had been following Novartis trying to get the FDA to approve this new drug for Leukemia, in clinical trials it was known as STI-571 now known as GLEEVEC! What a wonderful day, on May 10, 2002 it was passed. So, like so many times in the past my oncologist performed what is a very painful bone marrow biopsy to establish a baseline then I was started on this new miracle drug the following day. No more INTERFERON! JOY!All I suddenly had to do was to take 4 pillls per day. What a cake walk…..... Very mininal side effects. He had me stay on this dosage for one year before repeating the biopsy. I could not have been prepared for this. As always, the results takes about 2 weeks for a complete profile. I WAS IN REMISSION! I finally thought, now I can make plans again, what a MIRACLE I FELT! SO, though I had to continued on the same dosage, the next year was very normal. In 2003 yet another bipsy, once again even more into REMISSION.Though, I always still had Leukemia, for the only cure at this time is a transplant, which I was advised against this since I DO NOT have a related DONOR. This continued without much drama until July of 2005 when my oncologist performed a routine biopsy and everything went by the book though afterwards I was in pain that continued with each passing day. I waited a full 10 days, until it got to the point where I could not sit up straight or take a deep breath. I finally called my oncologist and he was very concerned, for he knew for me to call after hours, something was up. He said he wanted me to go to the ER immediately and he would call and they would be expecting me. My daughter had to help me walk to the car. When we arrived at the Cancer Center they were waiting and took me right in. First was a very painful exam, then x-rays and several physicians came into the exam room along with 2 RN’S with IV’S and MEDS to talk to me. They said that they were not sure what happened but when the biopsy was performed T-7 & T-8 was fractured. What??? Did I hear that right? I had 2 fractured vertebra’s… Within a very short time, the IV had been started and pain medicine started then I became very groggy. The next day my oncologist had many tests scheduled. It seems that I now had osteoporosis and it was just a fluck from the pressure on the lumbar spine that this happened. SO, now I needed what is a new procedure called a “vertioblasty”, under local they inject a mattter to build up the vertebra’s so that I could once again sit up straight. This was a tough one, though I was able to be discharged that night. But, not before my oncologist informed me that much to his surprise the biopsy revealed that I was NO LONGER IN REMISSION! No, he didn’t just say that, did he? Dr. Weiss hugged us both telling me that he is not givng up, not even close, that we would up my dosage another 200 mg per day. He said that we wouldn’t wait the normal year to repeat the biopsy that we would do it again in 6 months. I have had bone marow biopsy’s every 6 months since and I still am not in REMISSION again, though I know my day is coming. This all started in October of 1994. Who would ever think that a feeling of extreme fatigue and flu like symptoms would entail all of this. But, as a reminder it is 13 years and counting, and they said that I had 3-5 years. Hah! I fully am giving my all to kick cancer’s butt. But, given credit where it is due, I have a wonderful oncologist that has become my good friend. He is so wonderful & compassionate. But, I give the credit to GOD, for I prayed to allow me to be able to raise my children. What Mother’s worst nightmare is it to be given a death’s sentence at my children’s ages? MAJOR UPDATE: After having BMB every 3 months after learning that I was no longer in remission after 1 1/2 year of raising it to 800 mg daily a BMB revealed in Sept 2007 that I am back in REMISSION…...THANK GOD and GOOD MEDICINE

Cancer Symptoms

Low grade fevers, fatigue, extreme headaches, anemia, bone pain

Surgery Description, Dates & Side Effects

stem cell harvest,central line insertion,(1995) multiple bone marrow biopsies,(every 12 months, then 6 months, vertioblasty (2005) Sep. 2007 after raising my GLEEVEC dosage to 800 mg per day I am happy to say that I am now back in REMISSION Yeah

Radiation Description, Dates & Side Effects

None

Chemotherapy Description, Dates & Side Effects

Interferon from onset- continued hospital admissions,recurrent infections, suppressed immune system
Gleevec May 2002 to present, minimal side effects, mostly nausea, malaise

Bone Marrow Transplant Description, Dates & Side Effects

No match found. All my children tested immediately after diagnosis. They are all in the Natl Bone Marrow Registry for being a possible match for another person in need

Comments:

Posted on March 14, 2010 at 2:05:03 PM by andreaj

Wow, lady! You are one tough woman. And here I thought I had been through the wringer, but, that’s why I tell my kids (and anyone who whines at me about their minor ouches and issues) ‘There is always someone out there who is hurting more than you, who is going through more than you, so remember that before you complain’
(((hugs)))
Thanks for the comment left on my page btw!
~Gwen

Posted on March 13, 2010 at 1:57:48 AM by gwen

Hi Patti,

You are a tough cookie and an inspiration to me and others on this blog. Your courage is amazing and Cheers to Your Winning Fight toward Leukemia..Im in your Corner Always…

Love,
Elena

Posted on March 11, 2010 at 6:56:39 AM by elenacuomo

Dear Patty,

Thank you for your kindness. Right now I have a lot of people in and out offering to help, but I will keep your kind offer at the top of my list.

Thank you so much for supporting me and I am sorry I haven’t written sooner, but I feel like crap.

As for the draining of my lungs, I have to go into the hospital and have it done 2x a week. They numb the area, but honestly it hurts like hell.

I’ve stopped chemo for now so i can concentrate on getting rid of the fluids in my lungs as well as fight the infection in my lungs. It’s just a nightmare and I am so tired of fighting, but I refuse to give up!

Much love,
Sonia

Posted on March 6, 2010 at 8:03:00 AM by bleunote

Hi Patty, My name is Michelle and I see a doctor at The Siteman Center and He too is marvelous and was just wondering who your doc was?? I was diagnosed with CML in April of 08.

Posted on March 5, 2010 at 8:26:52 PM by Michelle (unverified)

Hi Patty,

Thank you for responding to my post. You are so adorable. Ive been wanting to write you to introduce myself. I read one of your posts where you offer to fly out and be with someone on the blog. You are an angel and that brought me tears. Its GOOD PEOPLE like you who we need on this earth. I pray for you and everyone on this blog. I am honored to communicate with you.

STAY STRONG!! I will stay Strong!! Aint nothing gonna take me down

xoxoxoxo
Elena Cuomo : )

Posted on March 5, 2010 at 3:39:56 PM by elenacuomo

I am so thankful to have friends like you. Thank you so much for thinking of me and I too am praying for you. I’ll post again when I don’t feel like a Mac truck hit me. Maybe it won’t be a Mac, maybe a small Nisson pickup! Ha!

Posted on March 4, 2010 at 10:02:34 AM by joyce888

Hi Girl. I went to your home page to find that I posted something of the same 3 times by accidident of course. I can not edit it out but you can. Tt is taking up a lot of space on your board. So sorry. I did send you a private post today, but that’s not the one I am referring to.

Take care, will be back at you soon.

Posted on March 4, 2010 at 8:00:43 AM by weezie

Hi Patty,
Wow! You’ve really sent my brain spinning with possibilities here. I am certainly happy to help plan and contact folks. Who was it who asked if anyone had a large house in Kansas? We should probably look at a big city because plane fares are cheaper to major airports. Jill might have some ideas—getting this blog started was no easy task. I am thinking that we might be able to get a hotel deal, if a hotel is what we need. After all, hotels cut deals for weddings and conferences. Why not for us? Lots of people have tight budgets from the financial havoc wreaked by this disease. We need a way to minimize expenses. So count me in. It would be so cool to see the BFAC thumbnails come to life.
How are you? What are your latest medical developments? I think about how you are doing.
Andrea

Posted on February 26, 2010 at 1:29:54 PM by andreaj

Thank you so much for the encouragement! I do intend to hang in there…there’s no other option!

Posted on February 15, 2010 at 8:57:40 AM by joyce888

Dear Patti,

Thanks so much for your note regarding my husband’s surgery. We read this blog site every day and wish that everyone here could have an easy time of it as we have. It’s so unfair. You are on our prayer list and we hope our prayers will help to keep you strong, no matter what comes along.

Peace,
Kathy

Posted on February 13, 2010 at 3:20:47 PM by curlygirl

Patti; You see what New Year’s brought, a triple posting. Sorry, just delete after reading, I tried to but couldn’t. Apologies

Posted on January 2, 2010 at 11:05:40 AM by weezie

Dear Patty,

Hello, friend! I just wanted to drop a line to say I hope you are doing well. I think of you often and hope your holidays were wonderful, your winter was not too cold, and your spring is coming on quickly!! Take care of yourself.

Peace,
Kathy

Posted on March 17, 2009 at 5:51:49 PM by curlygirl