Leslee update

[SimplyStar]

I was gone for a long week end  and in that time Leslee was in the hospital overnight for vomiting, Gemzar did it's dirty work on her, blood work was all good except the CA125  shot up almost 200 points, to 420, however she did have an infected tooth that might have caused some of it, scan was done, showed 2 suspecious lymph nodes , as she puts it, at the rear of her abdomen, liver and everything else looked good.  She will be going to Mayo ASAP and will be asking for a second surgery and the assay test,  they also have several trials going on that she would qualify for. No more Gemzar, Mayo agreed with her that the surgery and the test might be appropriate at this time, they have a trial going on with it now,  affiliated with Columbia U.  Bowel looked normal but they put her on a fiber free diet, she is not happy with that.  She had loaded herself down with a bunch of junk food just prior to the vomiting, almost all fiber rich.  I called her a stupid azz, which she agreed with, lol. Only thing that made her happy was that she lost 5 pounds  in the hospital.  Is there anyone on here that the Gemzar worked well for?    Marty

[butterflytc]

So sorry to hear that leslee is going thru a hard time, I hope Mayo can help her out. I was also told to cut down on fiber by one of the doctors after this last surgery, and do not understand the change from pushing fiber, to now cutting it down. I wish the doctors would be able to agree on what helps and what doesnt. I have come to believe they really do not know at all. and I am with leslee on the F doctors lol. I can think of lots of names (but medhelp might kick me off the board for mentioning any of them). keep your spirits up leslee, and keep your hope up marty.
love butterflytc

[SimplyStar]

The plan now is for her to get all her records from Mayo and  a plan  for the next steps from them and then to leave  the clinic here,  where she feels she is not being taken serious, the head Ono  told her that he did not have anything else to offer her. so we have looked into the University of Iowa Onocology dept and  the credits earned by them from the NCA, it will be a 26 mile drive, but she is happy with the idea,  Mayo is connected also with  them and can still help direct all  her care. We are now looking into the credentials of those  connected with the dept.  She is actually looking forward to the change, I knew she was not happy with the situation here, but she didn't think she could change facilities. She will have a full round of blood work and a pet scan done at her appt  at Mayo next week and she should be able to get to the Univ  quickly, Mayo does not want to operate on the nodes, they figure it would spread the cancer,  they did tell her to do the green tea as much as possible, they say it shrinks the nodes. Mayo was disgusted with her Ono here for suggesating the fiber free diet.  Jan is right when she tells the story   what is an A student called  when graduating from medical school.  a doctor, what is  a D student called   a doctor,  Leslee doesn't use bad language  but she asked what do they call one  that is an F   lol

[crecco]

  I do not know if you remember or not, but when I first started on Gemzar, it worked great for me. It was a very rough chemo to take, but as long as it was working I told my onc to go right ahead with it. When I stared it, my CA was just over 600. It brought that down to the lowest that it has ever been except right after my surgery, to 157. But unfortunaltely, it did not work long enough as my CA started going back up. It really played with my blood counts as I had several shots for anemia and a couple of times I was sent home with self injections of neupogin due to low white counts. But so far of all the chemos i have been on, it worked the best while it was working. I am even wondering if sometime in the future that maybe i could recieve it again combined with something else as the last time, I was on Gemzar alone.
  It is good that you are getting LesLee back to mayo, and I do hope that they will find something that will work for her without having to deal with surgery again.
      Chris

[vegas2cr]

Medically I can't add a thing.. but do want you to know that I am thinking of you both... Hugs.. Ronni

[cirella]

Hi Marty,
I am so sorry that Les has been so sick.  I pray that she has a successful surgery and that the Mayo can get her the help she needs.  I'm praying for all of you.
Love, L

[Laney8463]

Marty,
Just wanted to add my prayers and well wishes to Leslee and your family.
You are in my prayers.
Laney

[gah_70]

You may have already answered this question before, but has she been tested to see if her cancer is estrogen receptor positive?  I'm asking because with the CA125 shooting up so quickly while on Gemzar of all things, it makes me wonder.  Of course, the infection probably did have something to do with it.  Initially, I did have good luck on Gemzar.  My CA125 never fell, but it stayed somewhat stable.  I was on it for about 9 months before stopping about a month ago.  

I'm hoping things at Mayo go well for her, and she gets the answer she needs.

Gail

[Teresa222]

Welcome back! I had noticed you weren't posting for a few days.  I am sorry to hear of your daughter's problems with chemo.  Let us know what is going on.
Teresa

[dian07]

I hope this is the excursion where the answers are to be found.  We all have our fingers and toes crossed!  Please give Leslee and family my best wishes and know I send all the positive energy I can muster along with you.  Stay safe and keep us posted.
Peace.
dian

[silver&gold]

Marty
Sorry that Leslee is having such a rough time of it , I hope the Mayo get her on a good trial and she feels better soon.
It must be so awful for you having to watch your daughter go through so much.

Take care and Best wishes Angie

[JC145]

Just wanted to thank you for all of your information that you share.  I wish I could absorb it all.

Good luck and God Bless on your visit @ Mayo.  

Judy C

[Jan214]

Thank you Marty for that explanation.  We have butted heads but you are a good woman and a good mom.  I want you to know that because I will not be on here anymore.  I am done with crazy a$$ people leading others into possible death, I done with chemo and I am ready to be done with my life.  I have things to settle and can't be on here anymore.
Thank you again for all you have done for all of us.
Love,
Jan

[kimmywah]

My prayers and best wishes to Leslee for her surgery.  Sounds like the Mayo clinic is the  place to be.  
I will pray for down numbers and down cancer.

Love and Peace to you both.....Kim

[onniebay]

Marty,
I ended up doing carbo and gemzar as a first line because I had an allergic reaction to taxol.  I did get a remission, but it really played havoc on my blood.  I remember 2 weeks after my last chemo I had bruises all over my body and everytime I knicked myself shaving my legs it would not stop bleeding.  

I hope something at Mayo works well for her and she is feeling better.  

[SimplyStar]

  Jan   As far as I can figure out they were worried about a bowel obstruction , but the scan did not show one, why the fiber thing I have no idea,  as far as the hic up thing goes, no problem, she actually has had a fairly decent time  with all her chemo so far with the exception of this Gemzar,  yes they did say the infected tooth can cause a rise on the CA125 as it is an infection, they put her on antibiotics, Leslee's CA125 is a very good marker for her.  I only post  on her  results when I get an update worth talking about.  She does work at a 8 hour a day job and has been taking  her chemo and test days in stride, she is very positive and when something like this pops up, she says lets fix it .  I am sorry if some of you felt I was low balling you, that never entered my mind, I am into this about as deep as I can get without actually having it. I spend hours everyday researching everything I can find connected to OVCA,  I do this not only for my daughter  but for any of you that might benefit from it.  Why??  Because I feel so guilty that I did not know early enough what her symptoms were and what they lead to.  I am a realist and I know there is a cure out there, if I thought it would do any good I would organize a million woman walk on the USA and the rest of the World to YELL  that we need help and we need it soon. That is the only way we are going to get this disease
taken care of properly.

Pam , as always thanks  for your support, it means the world to me.   Marty

[msjazz]

I recurred with a ca125 of 260. We did carbogemzar day 1, gemzar day 8, for 3 rounds, until I reacted to carbo. My onc. then went to gemzar/cytoxan, and after really 1 or 2 rounds my ca125 had gone from 23 to 33  to 169. The morning she changed me to doxil it was 376. Gemzar was tough, hard on platelets and red and white counts, but they dropped just above transfusion level. I just have to wonder if the only thing really working in the mix was the carboplatin.
I hope she feels better  soon, and finds something a Mayo that works for her.  Donna

[Jan214]

Marty, I am very sorry that this has hit Leslee like this.  You know it landed me in the hospital 8 times and I never got a chance to eat anything between chemo and the hospital so it isn't the junk food although that may have just been more to throw up.
Do you think an infected tooth could cause the rise in CA125?  I had an abcess last year and my onc said that would not cause the rise. If you have some info on that I would love to have it.
The Gemzar brought my number down to 23 and I have wondered why my onc took me off of it instead of just getting me better nausea meds.  It started to rise immediately after he took me off of it.
Mayo is a good choice and I am sure they can fix her up there. The trials they are doing sound very promising.
What's with the fiber thing?  I have always been told to eat TONS of fiber because I had IBS, so why are they taking her off fiber?  I take fibersure everyday to be sure of you know what.
I cannot thank you enough Marty for sharing this.  To be perfectly honest a few of us were wondering what the deal with Leslees was.  You always talk about her cancer experience like she had the hiccups or something and quite often we have felt like you were calling us dumba$$es for doing cancer "wrong".  I am only saying this because I want others to know that I no longer feel that way and I am hoping now the others won't feel that way anymore either.  I know, we should have said something, but we thought that maybe it just scared you so bad you couldn't talk about it.  I figured that was the problem everytime you said things to me that well, we won't go there ever again okay?
Love ya,
Jan

[nyc lady]

Marty -

Sorry to hear this, she seemed to be doing well on the Gemzar.  
Let's hope that they agree to the surgery and it is a great sucess....also hoping that if she does get into a trial that it is the new chemo that will finally kick butt on Ov Ca.

Sending lots of love and positive engery to Leslee!!!!!

Love,
Pam