Research study on UPSC

AWK said:

Hi Maggie!

I went through three rounds of Doxil over the summer and it really wasn't that bad compared to carbo/taxol treatments. I am now considered platinum resistant.  The main side effects I had were being tired and lightly nauseous.  My feet did get dry and susceptible to blisters so I just put moleskin over the vulnerable spots and slathered on underlying smooth at night.  I worked full time the whole way through And we did a ton of other stuff.  I am having more side effects under the Avastin I am on now than the Doxil.  It was easy easy after all we have been through!  what questions can I answer for you?  Sending healing wishes!  Anne

Udderly smooth on my feet.  My blood pressure stayed normal, I ordinarily have low blood pressure.  Also, if you are inclined there is a clinical trial out there that you might qualify for using cabozantinib.  It is in phase two and showed good success in the first round.  I was all set for it, the team running it had a concern about one of my mestastic tumors adjacent to my heart.  A cardiologist and a cardio thoracic surgeon both opined it wouldn't be medically safe for me so I was rejected the day before I was scheduled to start.  Another thing my doctors have done is gotten approval from my insurer to send frozen sections out to Foundation One for genome testing.  We are awaiting those results which will identify further other types of cancer that might be present as well as various drugs the tissues appear to respond to.  All good things and hopefully options for you to check into if needed.  You are the first person in all of my searching that I have come across who is in a similar situation.  My doctors told me it was rarified strata and now I believe them!  We can do this.  Just another fork in the road on this journey.  Stay strong!

Ro10 said:

Maggie

I am sorry that  the taxol/carb is no longer working for you.  I can't imagine 3 years without using a hairbrush.   Ihave had 3 different rounds of taxol/ platins but my hair grew back between the rounds.  I have been bald four times.  I had the sandwich treatment initially and my hair grew back between the radiation and last three chemos.

you said you had a hard time finding this site.  If you google CSN ( Cancer survivors Network) and lick on the discussion boards and then Uterine, you should get to this site.   Then put it in your favorites, or bookmark it.

on the top of the uterine discussion board there are boxes for " keywords or titles".  If you type Doxil in one of the boxes you will get posts from some that have been on Doxil.  You might want to do that on the Ovarian Board also.  There have been more ladies on Doxil on the Ovarian board.

my doctor has mentioned Doxil if needed in the future, but luckily I have not needed it.  Many talked about problems with " hand and foot" sensitivity and peeling of skin.

I am glad that overall you feel good.  Your body has been through a lot.  Wishing you the best with further treatment.  In peace and caring.   Please come back and let us know how you are doing.

Hello Ro and AWK,

Thanks for your support.  I'm still having trouble navigating this site and finding where we left off.  I may have misspoken.  I have grown hair between chemo treatments; just not enough to be able to use a hair brush.  I let my fingers do the walking.  After the first round of chemo I took megesterol, after the second round it was tamoxifen and now I'm on letrozole.  I don't know if it is the letrozole or old-age osteoarthritis, but bone, joint and muscle pain are a real problem.  I consider myself a "young" 67, but I've had back problems since I was a teen and had a spinal fusion in 1965.  If anyone else has a problem with muscle cramps, I strongly suggest Tonic [quinine] water.  The quinine really helps and if it will work for you, it works quickly.

I've had neuropathy in my feet since the first chemo, but thankfully it has been lack if feeling rather than burning or pain.  When I get in the car I have to position myself to make sure I'm firmly in front of the gas and brake pedals.  I have never felt out-of-control but I am aware of my limitations.  The neuropathy has migrated to my hands, but I can still sew on a button.  Prior to the cancer, I made the first 5 grandchildren really fancy needlepoint Christmas stockings.  I'm trying to figure out what I can do for #6 and it looks like he'll have a sibling in less than a year.

I am not a doctor or a nurse, but I had a really wonderful 32 year career in pharmaceuticals.  Most of those years were spent in sales and sales training so I am what doctors consider "dangerous".  After my surgery I asked for a copy of my pathology report because I was getting conflicting results.  My oncologist was trying to protect me from the worst of the results.  Not everyone wants to know the whole story, but If you do, you own those reports.

I am happy to say I have had a rich and fulfilling life, even if I'm not ready to say good-bye just yet.  The most important thing is having peace in your heart.

Maggie

Donna,

I would take this one step at a time. You won't know your staging until after surgery. Let's hope this was caught early and is contained.

Also, chemo treatments have improved a lot from 20 years ago. They still are not easy, but they are more doable. There is a thread titled 'Ladies Going Through Chemo' that has a lot of information that may help you. Several of us documented our journey.

Also, welcome to our board and please come back and let us know how you are doing after surgery. I hope it all goes smoothly and you recover quickly.  So sorry you are having to face this beast. We are here for you!

Love and hugs,

Cindi

I'm so glad you found this group and asked your question.  I echo what Connie and Cindi have both said.  You are obviously a very strong person with what you've been through already and look at all the wonderful life you've had, the memories you've made all because you faced treatment and marched forward.

You can do it, whatever "it" turns out to be.  One day at a time, one step at a time.  We are here to link arms with you and walk along together.  Come ask you questions, share your concerns- there are SO MANY smart caring ladies who have already been there.  I do hope you'll keep us posted.  We'll be praying for and thinking about you - especially on Monday!  (((HUGS)))

I am so glad I found this group! 20 years ago I started a support group when I had BC and we grew to 50 members. Men and women all sharing the trip down the C road together. So much easier.  I do have this bad habit of jumping way ahead of where I am! So, your advice was good to tell me - One Day at a Time! I am a horse rider so am very active and just hate to think of not doing that. All of your stories are so encouraging. Thank you so much!

Surgery went very well - this laposcopic robotic surgery is amazing. I am feeling good and being pampered by family and friends. The lab results will come back later this week so will see what we will see. Thank you all for being on this site.

DF

Donna, Glad surgery went well. Thanks for letting us know and please give us an update when you get your results back.

Hoping for the best possible news for you.

Love and Hugs,

Cindi

I had no cancer outside of the uterus; 1A staging which was grateful news. I see the doctor on 3/3 for post surgery check and to discuss what she thinks is best follow up - observation or treatment.  I am feeling good and have resumed tutoring a child with chronic illness. She inspires me. Thanks again to all of you here.

Congrats, Donna. Although no cancer diagnosis is good, 1a is about as good as it gets. Hopefully you are continuing to heal well and are feeling stronger every day. Good luck to you and try to celebrate this good news! 

Great news!  I'm so happy you are feeling well enough to be tutoring.  Giving back and away is just the best therapy.