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Now dealing with leukemia

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi uterine cancer discussion board buddies,

I was recently diagnosed with leukemia, which probably resulted from the treatments I had 9 years ago that saved my life.  I'm in the hospital right now, trying to get my blood numbers stable enough to begin chemo.  Another tough road ahead, but I'll do my best, and like before I have good support and good medical staff.

 

But I really wish I didn't have this disease!

 

Susan

CheeseQueen57's picture
CheeseQueen57
Posts: 811
Joined: Feb 2016

It never stops, does it?  Prayers and hugs as you embark on this new journey. 

SF73
Posts: 273
Joined: Oct 2017

I am so sorry to hear about your news, SurvivingSu. This is not fair at all. I am confident that you and your doctors will put together a plan to beat this monster for the second time. Sending you much love! 

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

I'm so sorry to hear about the latest developments with you, Survivingsu! I'm glad you're happy with the treatment team. That makes a world of difference. I hope your counts go up soon and your chemo goes smoothly.

Sincerely,

Stacey

EZLiving66's picture
EZLiving66
Posts: 1357
Joined: Oct 2015

What treatment did you have nine years ago?  Standard chemo and radiation or something else?  I have UPSC and my doctor didn't recommend radiation because of all the side effects (like the chemo isn't enough??) including cancer.  He also stays away from CT scans unless there are other symptoms.

I am so sorry you are having to deal with this again!!  This d*mn cancer - there has to be a cure that we're just not seeing!!!

All my best and please let us know how it's going and if there is anything we can do to help you.

Love,

Eldri

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Susan, while I know there is a leukemia board and I am sure they will be helpful as well, please know your sisters over here would like to know how you are doing.  Prayers are headed your way!

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Thank you for all the inspiring good wishes!  That definitely helps -i know I'm not alone.  Here's a few answers to some questions re my past cancer treatments...I went through chemo and radiation from July 2009 to October 2009, then surgery, then follow-up chemo.   I also had lots of ct scans, 1pet scan, and the CT scans post-treatment diminished over time, first every few months, then every 6, months, then yearly, then none unless a symptom arose to merit one.  Facing another completely different cancer is pretty intimidating, and like my first cancer, this one is also quite aggressive and deadly.  But I'm a tough old bird with good medical experts in a time and location where new technology is in my favor.  So I will really try to beat this cancer too.  

Cheers,

Susan

Armywife's picture
Armywife
Posts: 313
Joined: Feb 2018

Love that can-do spirit!

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

I'll let you know how things are going from time to time.

Cheers,

Susan

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Hi Survivingsu, I too am sorry to hear you have cancer again. That is my biggest fear. I also was treated back in 2009. I will keep you in my prayers. ((Hug))

Lori

barnyardgal
Posts: 218
Joined: Oct 2017

I'm so sorry. It's hard to beat one cancer and then have to deal with another. Sending good thoughts and prayers as you beat this new cancer.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Im so sorry surviving su! So hopeful that your treatment will be successful. Yes keep us posted. We will all be cheering you on!

evolo58
Posts: 293
Joined: Dec 2017

Geez ... like you didn't have enough to deal with. Hope the treatments work, and you can get back to your life again for many, many years to come.

 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi you guys,

I'm doing my baby steps in this long journey.  Tonight I will be starting day 4 chemo, then thursday day 5.  I will probably be released from the hospital on Friday.  I then go home and do outpatient appts every other day.  After a week or two the chemo would have taken out all my white blood cells, the drs told me patients typically return to the hospital to deal with fever/ infection.  Eventually people can get a new series of chemo, or all over radiation to help erase the slate for the stem cell transplant.  There's a lot to this, and it's all new to me, diagnosed may 17.  It's a long road, but woo-whooo!  I've begun my baby steps!!!

Cheers,

Susan

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Susan, we are cheering you on!

SF73
Posts: 273
Joined: Oct 2017

Starting is half the battle. You definitely have the right attitude and I am sure it will pay off. Best of luck with your remaining treatments. Sending much love!

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Hey Susan, You have such a positive attitude. As we know we try to stay positive because it is so important. It amazes me that you can have your body’s immune system zapped to the ground and send you home but then home has germs your body is use to versus the hospital that has more germs you are not use to. Anyway please know we are praying for the treatment to work and wish you all the strength possible to get through the days ahead. ((Hug))

Lori

LisaPizza's picture
LisaPizza
Posts: 218
Joined: Feb 2018

So sorry you have to face this too, but glad treatment is underway. I feel like a little kid , "not fair!" I agree with NoTme, this board is here for you :) Baby steps are the way to go, even for a tough old bird, lol. Hope you're back home soon.

rcdeman
Posts: 256
Joined: Aug 2016

Dear Susan,

So sorry to hear you have to go through this again! It just doesn't end! Do you know what type of leukemia you have? Praying for your health and that you will pull through this! You've beaten this before!

Please keep us updated!
Rebecca

janaes
Posts: 772
Joined: May 2016

Survivingsu, you are doing such a great job with this knew news. Your attitude is great. Its okay that your still hear on this board for support. 

I know how it feels to get a second cancer because of the treatments of another.  I was told by my doctor that i got utetine cancer because of the radiation i recieved from hogkins desease i had 23 years earlier.

You sound like such a fighter and your doing it. I hope you are proud of yourself. Cancer stinks and its not fair that the treatments for cancer accually cause cancer but you are doing what needs to ne done.

I wish you the best as you go forward. If you have tough feeling please feel free to share them. Its okay.

Janae

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

So sorry to hear, but you sound like you have a positive attitude, and you know how well that will help! Praying this one gets defeated like your first one was! 

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

hello did you have Lynparza at all?

Tami

 

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi everyone,

Thank you so much for your very supportive emails!  I have high risk mds mds leukemia.   The damage from my previous cancer treatments made the 5 th chromosome of my bad cells faulty.  Some one in this email thread asked about a certain drug, I'm not familiar with it.  I do know today I have to decide whether to take a clinical trials drug sorafenib that may help rid the faulty genetic cells but has horrible potential side effects like heart and other organ damage.  Having to make these kind of decions in the weakened state I am in is quite intimidating!

Hanging in there!!!!

Susan

 

LisaPizza's picture
LisaPizza
Posts: 218
Joined: Feb 2018

I'm sorry to hear that it's so difficult. I obviously don't have any info on your situation . But you're in my thoughts as you make hard decisions. Adding my hopes in case you're short a full quota of hope on your own right now :)

Armywife's picture
Armywife
Posts: 313
Joined: Feb 2018

What did you decide about the clinical trial?

barnyardgal
Posts: 218
Joined: Oct 2017

I'm sorry, Su. When I was found to be really allergic to Taxol the doctor switched me to adriamyacin and carboplatin. Adriamyacin can cause heart disease, even years later. It scared me, especially since the one person I knew at the time who had chemo had adriamyacin, and it caused heart disease. I'm fine, at least so far. It scared me to death but it was the best option. Having to make these types of decisions are so hard.

janaes
Posts: 772
Joined: May 2016

Im sorry you have to make such hard desisions. Its so hard to have to weigh options that can effect your health either way. I had to choose between no more external radiation which ussually was used for my uterine cancer, and just doing bracytherapy. I chose bracytherapy because i didnt want more radiation to cause cancer again.  Who knows if my cancer will come back because i didnt do external radiation but i will tell you i thought about it and made the desision, of course with the help of my doctors, and it was the most logical desision. The one i felt the best about. Im confident you will do what is right for you

Janae

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi buddies,

Well I was hoping to be all set to begin getting prepared for my stem cell transplant possibility, my numbers had improved and I met with my doctor Monday.  Unfortunately while my blood counts had improved since my first chemo series in May/June, I still have the bad "blasts' cells, too many to qualify for the transplant right now.  And the transplant is the only way I can get cured from my high risk MDS leukemia.  So I'm back in the hospital getting another 5 day series of chemo.  It's going well so far!  Unlike the first time, my numbers are better and I do not feel sick, so this is a good start.  I will be getting day 3 chemo tonight, so I'm halfway to getting home if everything goes as planned.  Then it's recooperation time with multiple outpatient appts and transfusions.  I'm hoping this will get me closer to the transplant option.

So I am definitely hanging in there!  I hate this very long treatment disease, and all the worries associated with it - financial, job, family, pets, future, etc., But this only motivates me more to do everything I can to get better and back to my life.

Onward!

Susan

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Susan, I admire your positivity! Thank you for your update. Keeping you in my prayers for completing the chemo and getting the transplant.
Lori

janaes
Posts: 772
Joined: May 2016

Ive been thinking about you. Im glad to hear your update. You have such a good attitude. Im glad to here your not getting sick this time and hope it continues to go that way. I hope they find a trasplant for you.

Janae

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Susan, I am going to pray the chemo "blasts the blasts".  When you have the strength, please let us know how you are doing.  Prayers for all the warriors

LisaPizza's picture
LisaPizza
Posts: 218
Joined: Feb 2018

Yes, blast the blasted blasts! Thanks for checking in, I think of you. It's so unfair, but you're amazing.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Prayers!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Your positive attitude is refreshing and I think will help you through this new trial. I sure wish, though, that you are not facing this situation. I remember my gyn onc telling me almost 5 years ago that my chance of developing a different kind of cancer increased, due to having a previous cancer (Uterine). Bad genes, I guess! My Dad was almost 98 years old when he passed on, likely due to a blood clot. When he passed, he had lymphoma. However, that was one of 5 different cancers he had in his adult life! He also had and was treated for: prostate cancer, urinary bladder cancer, basil cell carcinoma and squamous cell carcinoma. In spite of all that he lived a fantastic, wonderful life. Never ever give up hope! 

Hugs,

Cathy

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