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Update after failed Carbo/Taxol

ayostacey
Posts: 57
Joined: Sep 2015

Hello Ladies, I dont know if any of you remember reading my posts about my sister. In a nutshell....a year ago she found out she had Uterine cancer. (she's 46). They did a total hysterectomy, removed some nodes for testing and did a wash. They staged her at 1A because it had not gone more than 30% into the uterine wall. They said it was grade 2. Nodes were negative, wash was negative. As a preventie measure, they did internal radiation...several rounds.  They told her 95% chance its never going to come back. 4 months later, she was out of town on a vaca with her kids and husband and had really bad pains in her abdomen, she thought it might be appendix so she went to the ER. They did a CT scan and told her to go home and see her Oncologist. The cancer was back. Small tumors in about 7 places. No organs though.  They started her on Carbo/Taxol every 3 weeks. This did not start for 6 weeks from her CT scan while on vacation, which i was mad and thought it took too long to start. Anyways...after her 3rd chemo, they did another CT scan. Some had slightly shrunk, some stayed the same, but now there were 2 in her liver. Her Dr said MAYBE they got there before the chemo started, and he wanted to wait 2 more rounds of chemo and do another. Ok..so New years Eve she went for the results of that one and it was what they called mixed response. No new ones, some shrunk, others stayed the same, and a couple (including one of the ones in her liver) got slightly bigger. She went to another Dr who she had seen previously for a 2nd opinion and she decieded to continue on with the new Dr. He wanted to stop the Carbol/Taxol because as far as he was concerned, it wasnt working, and he didnt want to keep soldiering on with something that really wasnt helping. HE started her right away on Doxil once a month. She had a port put in and prior to her second Doxil treatment, he said her CA125 went up to 340 from the 200's. Now, I thought that Doxil does make it go up before it goes down, but i guess he is thinking that wiht the jump and also her abdomen and side pain, that the Doxil is not working too well. EVEN though he was the one that initially told us that doxil is slow to get started, so i dont know why he was freaking us out after only one treatment. So she had her 2nd one now and she will have a 3rd in a couple weeks. After that one he will do another CT scan but he is already talking about trials and that really really worries me. If anyone can chime in on their experience with any of this, I would gladly appreciate it. Im really worried. Thank you in advance!! xo

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

ayostacey, I am sorry I cannot give you any advice based on experience, but is there anyone else she can go to for a second opionion??  Where do you live in case someone can chime in with some ideas of someone else to check with.

I am so sorry to hear all this.  Your sister and your family are in my prayers. 

ayostacey
Posts: 57
Joined: Sep 2015

Thank you, she is in Rhode Island, but goes to Boston for treatment after leaving first Dr that she was with throughout the Carbo/Taxol...that Dr was in RI. both very good hospitals and Drs, so they say.

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

I am so sorry.  It is so random on whose cancer mestastasizes and whose doesn't.  I'm sorry I have no familiarity with any of those chemo treatments but maybe one of the other ladies here does.  I'm hoping for the best for your sister!!

 

Love,

Eldri

ayostacey
Posts: 57
Joined: Sep 2015

Thank you!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

and your family.  I have had some of the same problems.  I was diagnosed in Aug. 2012. radical hysterictomy in Oct. 2012. Headthe sandwich treatment( 3 taxol/Carbo 28 external radiation, 2 brachytherepy and 3 more taxol /Carbo.  In June 2013 I was NED only to have it return in Jan 2014. 5 more rounds so taxol/Carbo.  CA125 was down to 6 for several times and my ct scan showed NED so we stopped because my blood counts were so poor.  4 months later it had metastisized again.  Back to the taxol/Carb.  After 3 rounds, I had a reaction to the Carbo and we switched to Doxil.  I had a lot of stomach/digestive problems with that, but it seemed to be keeping me stable.  In Sept. 2015. I ended up in the ER with what turned out to be a tumor intwining itself between my small intestines.  Gulf all size tumor and 42 cams of intestine removed.  My doctors decided to go back to the taxol/Carbo chemo and desensitized me to the Carbo by running it over a 7 1/2 hr time frame.  After 4 rounds I had another reaction to th Carbo and am now trying something called Topotecan.  I will get my second round of this next week.  It is given for about 2 hrs for 5 Days.

to make even a longer story a little,shorter,  there is aways hope.  If1 thing does not work something else might.  Hugs and prayers to you and your sister.  She is blessed to have you .  Lou Ann 

ayostacey
Posts: 57
Joined: Sep 2015

Thanks for sharing that LouAnn, I appreciate it you taking time from your own ordeal to help others. 

takingcontrol58
Posts: 261
Joined: Jan 2016

Oct 2014 - Diagnosed with Stage  3b endometrial cancer (small tumor on outer rectum and spots on ovaries
Nov 2014- total hysterectomy
Jan 2015- CT scan prior to treatment- cancer metastasized to 34cm tumors (liver, spleen, rectum,plus nodules on outer
colon, lungs). Now considered Stage 4- told I had 4-6 mos to live. I guess they thought I'd be one big tumor.
Jan 30 2015 - Started Taxol/Carbo
Feb 25 - Began taking metformin (top drug for insulin resistance and Type 2 diabetes-also anti-cancer) I am insulin resistant-
This was after 2 chemo infusions (I originally joined a trial to get the drug but could not risk not getting the real drug as
it has many known anti cancer properties, which is why trials are being done
Mar 31- after 3rd chemo and one month on metformin, 88% of my mets disappeared -down to 4cm
May  21 - finished chemo - still had 2 cm tumors
August 2015- all tumors gone - NED -
Instead of dying, I went into complete remission in 6 mos. 
Still remain on metformin today and am still NED. No chemo since May 2015. CA125 is 13.

Please talk to your doctor about getting your sister on metformin. If she has Type 2 diabetes and uses another diabetes
drug, she needs to get on metformin because it is the only diabetes drug that has anti-cancer properties. It stops
cancer stem cells which evade the chemo and cause new cancer. It also reverses a key mutation for endo cancer.
I believe metformin has prevented any new mets from forming.

You could ask the doctor about going back to the Taxol/Carbo as that was the trial I was in- adding metformin to the
Taxol/Carbo to make the chemo work better beccause it only works on about 40% of the people who get it. Those are
the stats I was given.

Best of luck.

Takingcontrol58

 

 

 

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

incredible! I hope you continue to thrive and remain NED. Can a woman who does not have diabetes safely take this drug? Did you have your genome analyzed? 

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

ayostacey, has she had her genome evaluated? Perhaps this would provide some insight into what treatment might work. I remember thinking when I was told that I had stage 3a, grade 3 cancer that no one could know for sure whether or not that was an accurate diagnosis, since our level of scientific knowledge does not allow us to see individual cancer cells. Your sister's cancer progression is heart breaking. She is fortunate to have you as such a loving sibling.

Warm Wishes,

Cathy

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hey Cathy

i sent you a private message regarding genomic testing.  Did you receive it?  You seem knowledgeable about this topic. Could you share with us newbies what type of questions we should be asking about genomic testing?  I've been hitting a few walls. Thanks so much. 

Susan

ayostacey
Posts: 57
Joined: Sep 2015

Thank you Cathy, when her Dr told her a couple weeks ago that she might have to start thinking about clinical trials, he said he would look more at the tumor to help determine the best treatment. I would think this wouldve already been done. but i guess they know what they're doing. She went for a check up 2 days ago and she said she is feeling a lot less pain, although her CA125 had gone up 20 more points to 406. This is after 2 Doxil. They said it going up is not uncommon, before it starts to go down, although they naturally would like to see it going down, they did say however, that the fact taht she is having less pain is possibly a good sign that its working. she had 2 days of hope and now today she woke up with a bad pain in her upper right abdomen, sort of under her rib. Of course, you'd think liver ...but hopefully nothing serious. she saw Dr today about it, and he said if it still hurts tomorrow they will do a scan. ugh. also the new CA125 has gone down to 383. dont know if that is significant enough to mean anything. I just pray she catches a break...she has never been given any good news!!

ayostacey
Posts: 57
Joined: Sep 2015

Amazing. My sister is type 2 diabetic and actually has been on metformin long before discovering she had cancer. It was actually during the 6 rounds of Carbo/Taxol that she was changed to a different type of diabetes meds. Mainly becuase they thought the metformin was causing a lot of the diareah she was experiencing while in chemo. She actually always got it from the metformin, but didnt care too much when she was not fighting for her life. I hve asked her to talk to her dr about goign back on metformin, is there a certain dose that needs to be given, other than the normal one she wouldve been taking before?

ayostacey
Posts: 57
Joined: Sep 2015

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joyce6611
Posts: 48
Joined: Oct 2015

I am a stage 4 endometrial cancer metastatic to both lungs and have been given carbo-taxol with minimal shrinkage.  In the past I was on metformin for prediabetes.  I stopped taking it when I was diagnosed with recurrence because I thought I would get sick on the chemo and did not want to deal with side effects of metformin too.  After reading your post, I think I should take metformin again.  What dosage are you taking?  

Joyce

takingcontrol58
Posts: 261
Joined: Jan 2016

Abbycat2,

I am not diabetic, but I was insulin resistant at the time of my diagnosis. I was also 30lbs overweight. Those pounds
are now gone.

I did have my genome analyzed. Mutations were PlK3R1, CTNNB1, RB1 and SF3B1.

Metformin lowers insulin and insulin growth factor 1 levels and slows down tumor growth.
Receptors for these growth factors are found on many tumors, especially endometrial cancer, which activate the
Pl3K/akt/mTor pathway.  Metformin inactivates this pathway.

I think something like 80% of endometrial cancers have a mutation on this pathway. It controls our metabolism
and the creation and death of cells.

I started on metformin Feb 2015, and still remain on the drug. My doctor increased the dosage after I finished
chemotherapy last May. I have had no side effects on this drug. And they are certainly minimal compared to
chemotherapy. I do take Vit B12 supplements as it can lower your B12 levels.

The NIH has recently approved a new trial for metformin as an anti-aging drug. They think it can prevent you from
getting diseases like cancer, heart disease and alzheimers until later in life and think it could help you live past 100.
It is fascinating to read what it does at a cellular level- it ensures your DNA keeps getting replicated exactly like
it should without errors(mutations). I guess thats what keeps you from getting some of these diseases.

Takingcontrol58

 

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

What dosage of Metformin are you taking?  I asked my doctor to leave me on it even though my A1c returned to normal once I finished chemo.  I'm taking 1000 mg per day.  Hopefully it works since I was only able to finish three chemos.

Love,

Eldri

takingcontrol58
Posts: 261
Joined: Jan 2016

My initial dosage was 500mg, 2X/day (this was when I was receiving chemo- Taxol/Carbo).
This may have been to see if I experienced any side effects, which I did not.

After chemo ended, my dose went to 750mg, 2X/day. That was June 2015.  I remain on
this dosage today. Your doctor would determine what is correct for you.

Also, you might want to have your sister's blood tested for ferritin. It is a marker that helps
determine if your treatment is working. The test measures iron levels in the blood. Cancer cells
are high in iron.

Takingontrol58

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

Thank you for the information about metformin. It sounds promising for all of us. Cheese Queen, I apologize for not responding to your post on this thread. My March has been quite busy.  I didn't receive your private message

Jacjac2's picture
Jacjac2
Posts: 44
Joined: Feb 2016

i begin Doxil on Dec 27, once a month for the rest of my life.  Never been in remission. How has it effected others. 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Please remember that what does or doesn't work for one may be the exact opposite for someone else.  I was on Doxil for7 infusions. It worked on some smaller tumors but let the larger ones do what they wanted.  One grew between my intestines cause ing big problems.  I found the side effects very unpredictable so I was never sure when something would hit.  I had a lot of problems with severe nausea.  Biggest side effect was hand and foot syndrome which is similar to Neuropathy.  Hand and feet burn. It went way up my legs.  Luckily it go away after I stopped treatment.  Others have had good responses to Doxil, I was just one of the unlucky ones.  I was told 3 years ago that I would be on chemo,for,the,rest of my life with maybe a few chemo vacations.  I have many more good days than bad.  Even though that sounds so disheartenin, it is very doable.  Thanks to treatment, I have been able to enjoy 4 great grand babies and many other joys of life.

Hugs and prayers, Lou Ann

ryee21
Posts: 21
Joined: Nov 2016

i am very sorry to hear about your sister's reaction. I am having a hard time reading because I did my first treatmment of carbol/taxol 7 days ago, but can you tell me what type of uterine cancer she was diagnosed with?

take care

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