Chemo options

Last January and February I had reactions to the carbo, so we switched to Doxil.  It helped with the small tumors, but did nothing to the larger tumors.  One intwined itself in my small intestines and I ended up having 42, cm of my intestines removed in Sept.  My doctors decided to try to desensitize me to the Carbo since it did work with the taxol. So now I am getting Taxol on one day and on the next day I get the Carbo over a 7 hour time frame.  I looks like it may be keeping it stable, but we will know for sure in Feb. when I get another Ct scan.  I am so sorry that you are having such a hard time finding something that works.  Have they tried the genomic testing to find a match?

  Hugs and prayers, Lou Ann

Maggie,

Please ask your doctor about metformin. It is a pill that is anti-cancer and anti-diabetes. It is the most prescribed diabetes drug
in the world. It is generic and cheap.

In Jan 2014, two months after my hysterectomy, my CT showed  34 cm of metastatic tumors (liver,spleen,rectum, plus nodules on lungs,spleen,colon). 

After month on metformin, my CA125 went from 280 to 20.
88% of my tumors disappeared after one month on metformin.
In August 2015, I was declared NED, in remission.  All tumors gone, without surgery.

Metformin is a miracle drug. 

I would suggest you try the metformin first as the chemo is obviously not helping.  You may be chemoresistant at this point.

I had 6 treatments of taxol/carbo and started metformin after two infustions. I contintue to take metformin and many supplements. 

I would take it for a month or two then get retested.

You can read my whole story under NED from Stage IV metastatic cancer.

May God be with you.

Taking Control58

NoTimeForCancer said:

takingcontrol 58, I have a

takingcontrol 58, I have a friend who has had their UPSC reoccur and I told her about your post.  Can you provide me more information?  Where did you get treated, who treated you, what was your diagnosis, did you just receive this treatment recently...?

She is not a member of the chat board and I promised I would reach out for answers.  The only thing I could find was information at the NCI website from April 2013 - almost 3 years now.  

Thank you in advance.

You can read my whole story in detail- first post Jan 10, 2016 "NED from Stage IV metastatic cancer."

In summary.
Diagnosed initially with Grade 3 endometrioid carcinoma 
Hysterectomy( had small tumor on outer rectum and small spots on ovaries as well) Nov 2014

Jan 2015 - CT revealed cancer metastasized as told above - 34cm measurable tumors- now Stage IV
Told I had 4-6 mos to live,very fast growing cancer.  More tumors after surgery than before surgery

Began chemo (Taxol/Carbo) Jan 30, 2015 at MSKCC in NYC (only got chemo from them)
Joined trial that added metformin to Taxol/Carbo -half patients got placebo

Had 2 chemo infusions then met with integrative oncologist Dr. Mitchell Gaynor- who died in Sept 2015. Famous oncologist in NYC- Gaynor Oncology
I asked to be put on the real metformin because I couldn't risk dying over a drug that 125million people take around the world- was approved by FDA in 1995.
Wasn't going to be a guinea pig for a drug that has been around 20 years.  MSKCC wouldn't put me on the drug. Also take 44 supplements daily.  Some do the
same thing as metformin.

Metformin is prescribed for PCOS (polycystic ovary syndrome) so most gynecologists know about it. My own gynecological/oncologist/surgeon prescribes it.
She is associated with Lenox Hill Hospital in NYC. She is who I visit today for follow-up.

Metformin works at a cellular level and metabolic level- and key risk factors for EC is being overweight, diabetes and insulin resistance (I am Insulin Resistant)
Insulin fuels cancer growth
Metformin has many anti-cancerproperties.  Go to www.pubmed.gov for hundreds of articles (search metformin and cancer). It helps all types of
cancers because it works on key body processes we all have.  If you want to get technical, look up article PMCID: PMC328095. It also targets a key pathwayP13K/AKT/Mtor
Many drugs are in development to target this pathway- none have been successful so far (everolimus is one). 80% of cancers have mutation in this pathway.

They have known about the anti-cancer properties since the drug wasFDA approved back in the 1990s.  There are many trials with this drug you can look up at
www.clinicaltrials.gov.  I don't understand why they are doing trials when a doctor can just prescribe if it can help you - called "off label" prescription. The dose I
started with was much lower than the dose in the trial.  I've had no side effects from this drug.

After 3rd chemo and one month on metformin (March31, 2015), got anotherCT scan- 88% of my tumors were gone- down to 4CM measurable tumors
Got 3 more chemo infusions (6 in total)
Last chemo May2015
Next CT Jun 2015- 2CM tumors left- refused additional chemo* (MSKCC said Taxol/Carbo only works on UP to 40%of patients: useless for remaining 60%)
PET/CT in August 2015- declared NED
Next CT this week
No new tumors since CT of March 2015

I've spent alot of time researching why I got cancer as the doctors will not do this for you.  I've eliminated most of the initial risks I had which probably
gave me the cancer. Hoping this is the way to stop a recurrence.  Have to find the root cause of your cancer. Chemo doesn't do that.

Does your friend know her tumor mutations?  I know mine and metformin addresses two of them as well.

Let me know if you have other questions.

Takingcontrol58

CJC43 said:

New and Question about Chemo Drug

Hello Ladies! My name is Jennifer, I am new to this site and I'm really not sure where I should be posting. I have questions about Chemo so I figured this board was as good as any. My mom (Carol) was diagnosed with UPSC cancer lllC in March of 2011. She had a complete hysterectomy and 8 rounds of Carbo/Taxol and then 12 rounds of maintenance chemo of Carbo/Taxol. She then stayed in remission until May of 2015 when a her CA-125 levels went up and PET scan showed cancer back in her abdomen. She then had 6 more rounds of Carbo/Taxol and went back into remission. She just had a CT scan last week after her CA-125 levels went to 73 and the CT scan showed the cancer back her abdomen in two small places. The doctor told her since it came back after just 3 months of treatment that Carbo/Taxol wasn't an option for her anymore and that she would need to try a new Chemo drug. She is scheduled for 3 rounds of Chemo starting this Thursday with the Chemo drug Doxil. I have read a lot of posts on these message boards and I know it works for some people and some people not so well. I have also read where it helps to put ice on your hands and feet during Chemo and after. Do any of you have any experience with Doxil and can you suggest tips for warding off the side effects? She has always done well with her previous Chemo treatments so trying a new one is kind of scary. Are there any other treatments we should look into? At what point did any of you search out a second opinion for more options? Other than this my mom has always been very healthy with no cancers like this that run in the family. She is 72 years old and still works full time (just for the interaction and fun of it) even when she was taking Chemo after her surgery back in 2011. She's a trooper and I want to make sure I research all that I can to make sure she is getting the best care and treatments available. She is actually feeling great right now so finding out that her cancer was back was a complete shock to her. Her doctor told her it would be ok with him if she waited 3 months and did another CT scan before trying the chemo and tried to explain quality of life vs quantity of life to her which by the way didn't go over very well at all! He told her they could be as agressive as she wanted to be with this and so she opted to try the Chemo now because I am not sure she could really enjoy life knowing that this is just sitting and growing in her without trying to get rid of it. Please let me know what you think or if this question needs to be somewhere on this site. I appreciate your time and or willingness to help. Thank you!

Jennifer

Jennifer, welcome to this site.  I am sorry we are having to meet because of your mother's cancer, but she is lucky to have such a loving and caring daughter.  While I can't imagine what my family thought when I told them I had cancer, I do know, I couldn't have made it without their love and support.

I don't think there are a whole lot of options out there.  I do have a friend who has UPSC and is taking Avastin for her recurrence.  Maybe you can inquire about that as an option.  My friend is tolerating it very well, but it is very expensive.  Also, is it possible to talk to another doctor??  It may be the doctor she had, but maybe he isn't the right doctor for her now????

There are a terrific group of women here, and they will tell you what they know.  You can ask anything here.

Thank y'all for replying

Thank you both for your replies! Lou Ann mom never got ice booties for chemo on Carbo/Taxol but I wonder if that would have kept her from having Neuropathy so bad. That has been such a pain for her to deal with even when she is off Chemo it has had a lasting effect. The Nuelesta shots were awful! She only had one during her first round of Chemo and it made her bones hurt so bad and she said it was like her mind wouldn't cut off at night and she payed solitaire in her head all night long. After that her doctor didn't make her take anymore until she had her recurrence and then she had to get one after each chemo. It wasn't as bad as that first one but it still wasn't great. I think she had more side effect from it than the Chemo. She also had to have a handful of blood transfusions after her first go with chemo but last time she didn't have to do that. She asked if she would have to take the Nuelesta shots with Doxil but I believe he told her no. She had her echocardiogram last Friday and I assume it all turned out ok. I am glad to know that they have improved the drug and that it is less likely to cause heart damage. I was really worried about that! I am going to do my best to try and show her this site and get her set up to where she can read these boards and post. She's not the most tech savvy person in the world but I think she would find great comfort in knowing that someone else understands what she is going through. You ladies are truly an inspiration. I have lurked on this board for a very long time not know how or what to post. All of your posts have been of great comfort to me and to many others I'm sure. Thank you for sharing your stories and a little piece of your life to help others  

Maggie,

I have minor neuropathy in my left toes from the Taxol/Carbo

I take Alpha Lipoic Acid supplements (Jarrow). They were recommended by my integrative oncologist.
They increasethe production of glutathione, something our body makes.  He also said
that an IV infusion of glutathione would cure the neuropathy. Since he recently diied, I have not tried the infustion.
You would need to speak to a doctor about that.

I'm trying to avoid taking more drugs.  Just on metformin andsupplements.

My husband has neuropathy- no doctor can determine why- he started taking the supplementsand says they
have helped him tremendously.

takingcontrol58 

Maggie, another chemo option to consider is Ifosfamide/Mesna/Taxol. I have MMMT uterine cancer which is very aggressive so the gyn-onc is throwing everything they have at it. I've had 3 rounds of this combo so far, will start 25 radiation treatments in February and then will have 3 more rounds after that.

Wishing you strength and good health,
Kim
Debulking Surgery 10.5 cm (TAH & BSO, 14 lymph nodes excised) - Sept 2015; 47 years old
Dx: Uterine MMMT Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - Apr 2016
Radiation - external, 25 treatments over 5 weeks - Feb - Mar 2016

Maggie_mac said:

Thank you all for your

Thank you all for your suggestions and support.  I saw my oncologist this past Tuesday and we talked about metformin.  He had participated in a metformin study of breast cancer patients but had not received any results.  His recommendation was Taxotere, so I started on that.  In the 2 weeks since my last blood tests my CA125 jumped from 378 to 422.  That will be my starting point for measuring the efficacy of the Taxotere. 

I will be getting the Taxotere every week for 3 weeks and then have a week to recover.  I expect my hair to be gone before my recovery week and even before we know if its working.  This will be the 4th time I've lost my hair so I know the drill.

I wish you all strength and happy thoughts.  God bless you all.

Maggie   

Maggie please speak to your Dr about permanent hair loss with Taxotere. There is a conversation going on on this board about it. I received Taxotere in my last three chemo treatments. That was in the spring of 2014. My hair did grow back but much thinner than before, especially on the top and in front. It doesn't happen to everyone but it's worth discussing.  Sandy

Maggie_mac said:

Taxotere

Dear Sandy,

After my first Taxotere infusion on Tuesday I did look up the drug.  From what I read, between 6% and 7% had permanent hair loss.  Since yours wasn't complete loss, I don't know if women in your situation are included in the statistics.  Since I've failed on so many drugs, I don't know where to go if I stop the Taxotere.  I also wonder if I'm more suseptible because I will be getting it every week ( 3 weeks on, 1 week recovery).  I also don't know if my regimen is a lower dose.  I guess I have a few more questions at my infusion on Tuesday.

I'll have to admit I'm getting weary, even though I know I need to stay strong for my husband, the kids and grandkids.

Maggie

I had Toxotere, Maggie, and my hair, after eight weeks has not grown back at all.  This week I noticed that half my left eyebrow is also gone now.  But.....I did read that doing Taxotere every week resulted in LESS permanent baldness, so you probably will be fine.

Love,

Eldri