Uterine Stage IV B Reoccurence Vagina

linmk
linmk Member Posts: 58
edited March 2018 in Uterine Cancer #1

Hello, This is my first post here. I'm 69 years old. In May, I had a complete hysterectomy which was preceded by six rounds of chemo,(Carboplatin & Taxol) which I tolerated well and was successful in shrinking the tumors. Surgery went well, and I was placed in surveillance, no additional treatment. This past week in early Sept, I went in for the three month checkup. I told them that I was  having some light vaginal bleeding. They found a 3 cm tumor in the anterior of my vagina. It's a reoccurence of the cancer. Blood tests and a scan were ordered. The doctor is supposed to contact me with her recommendations for treatment. Right now, I'm anxious and depressed. Has anyone else experienced something similar?

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Comments

  • bluehyacinth
    bluehyacinth Member Posts: 51 Member
    Yes, I was never ned, had

    Yes, I was never ned, had chemo and radiation which did nothing and was put on death row while we searched for options. I tried Metformin, which did nothing, had genomic testing which showed many alterations among others MSI-H which Keytruda was not approved for then (it is now no matter what type of cancer as long as the tumor is MSI-H) and my tumor shrunk and more, I am still here. You might want to ask about getting genomic testin of one of your primary tumor.

  • linmk
    linmk Member Posts: 58
    edited September 2017 #3
    Genomic Testing & Glucophage

    Thank you for your response bluehyacinth. I was on metformin when I had the chemo then I switched to name brand Glucophage after chemo. I've been told by knowledgeable people that Glucophage is more effective than generic metformin in managing blood sugars. Also, I recently asked for genetic testing of my tumor, but I haven't been told the results yet.

    I'm glad to hear that the Keytruda has been helpful to you. Thank you again for the info.

  • Kvdyson
    Kvdyson Member Posts: 789
    edited September 2017 #4
    linmk, I am so sorry to hear

    linmk, I am so sorry to hear about your recurrence. It is good that you had the tumor genetically tested. There are so many new and effective treatments out there. Hoping that your doctor contacts you soon with some good options for you! Wishing you peace and strength, Kim

  • linmk
    linmk Member Posts: 58
    Phase II Rad/Let/Lee Clinical Trial

    Update: I have just started my first week in a clinical trial at MD Anderson. It involves taking three oral drugs in the morning. So far so good. No bad side effects. I feel pretty good. I was told that I am the third person to be enrolled in the study. Kvdyson, thank you for your good wishes. I hope that you and everyone on the board is doing well.

  • EZLiving66
    EZLiving66 Member Posts: 1,477 Member
    edited October 2017 #6
    linmk said:

    Phase II Rad/Let/Lee Clinical Trial

    Update: I have just started my first week in a clinical trial at MD Anderson. It involves taking three oral drugs in the morning. So far so good. No bad side effects. I feel pretty good. I was told that I am the third person to be enrolled in the study. Kvdyson, thank you for your good wishes. I hope that you and everyone on the board is doing well.

    Please keep us updated on

    Please keep us updated on your treatment.  Although I currently am NED, who knows when a recurrence may strike especially with my UPSC.  I am sure glad you are not having any bad side effects with your new treatment.  Good luck!!!

    Love,

    Eldri

  • ForT1
    ForT1 Member Posts: 4
    Hi Linmk

    Hi Linmk

    I was recently diagnosed with uterine cancer, and am supposed to start Carbo/taxol next week. I’m nervous since it sounds like the cancer did not respond to this treatmen. I hope the clinical trial is better for you.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    linmk said:

    Phase II Rad/Let/Lee Clinical Trial

    Update: I have just started my first week in a clinical trial at MD Anderson. It involves taking three oral drugs in the morning. So far so good. No bad side effects. I feel pretty good. I was told that I am the third person to be enrolled in the study. Kvdyson, thank you for your good wishes. I hope that you and everyone on the board is doing well.

    Tell us more

    Hi Linmk

    Can you tell us what the names of the 3 drugs you’re taking are?

  • linmk
    linmk Member Posts: 58
    edited October 2017 #9

    Tell us more

    Hi Linmk

    Can you tell us what the names of the 3 drugs you’re taking are?

    Everolimus, Ribociclib, & Letrozole Clinical Trial

    I am taking the above three oral drugs daily, and I go to MD Anderson for followup and tests. I'm nearing the end of cycle 1. If the drugs are working and if I am not having bad side effects, (ie heart problems) I will continue into cycle 2. I have not met anyone else in the study, but I did hear that some people were experiencing low platelet counts and mouth sores.

  • linmk
    linmk Member Posts: 58
    ForT1 said:

    Hi Linmk

    Hi Linmk

    I was recently diagnosed with uterine cancer, and am supposed to start Carbo/taxol next week. I’m nervous since it sounds like the cancer did not respond to this treatmen. I hope the clinical trial is better for you.

    Carbo/Taxol Success Then Cancer Reoccurrence

    Hi Fort1, Actually, I was a carbol/taxol success story. Much to the surprise of my doctors, my cancer responded very well to the chemo treatments.  I went through six cycles. I had a hysterectomy after the chemo treatments. No cancer was found, not even in the lymph glands. After surgery, I was placed on surveilance. Three months later the cancer reoccurred in my vagina and in the lymph glands surrounding it. Also a new cancerous tumor appeared near my adrenal glands. Everybody is different. Also, I'm stage IV, so statistically speaking, the odds are against me. Take care and good luck to you. Your case and outcome may be much better in the long run than mine.

  • hopeful56
    hopeful56 Member Posts: 73
    Hi linmk,

    Hi linmk,

    Soory to have to go through a recurrence.  I hope you respond well to the clinical trial. You are on a great site for support. 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    linmk said:

    Followup: Everolimus, Ribociclib, & Letrozole Clinical Trial

    The Everolimus, Ribociclib, & Letrozole Clinical Trial did not help me. The cancer spread and I experienced the dreaded canker sores, a noted side effect of the drugs. The sores began in my throat and at first I thought I just had a sore throat. Then the sores appeared in my mouth and on my lip. I've never had canker sores before and didn't quite know how to deal with them. Gargling with bicarbonate of soda and/or salt solution did not help. The sores are taking some time to go away. The drugs also raised my fasting blood sugars and triglycerides. I think the doctor wanted to put me on statins. Something I didn't want.  Other bad side effects included fatigue and lack of appetite. Also, everything I put in my mouth tasted like sugar.

    I was relieved when the doctor took me out of the study. The clinical trial is still in its early stages. However she said that so far about 40% of those in the study have a positive response. I only wish that I had dropped out of it a few weeks earlier. I am feeling better now, but am still dealing with the mouth sores. After Christmas I start Gemcitabine-Cisplatin chemo treatments. It's a 50-50 chance that it will work. I'm stage iv, so I realize that my chances of surviving more than 15 months are not good. I am not afraid to die. I just want to live well.

     

    Mouth sores

    I‘m so sorry the trial didn’t work for you. I used to get cankor sores often and a prescription paste called Kenalog in orabase used to quicken their healing for me. I think it’s only a generic product now but it’s worth a try. They are so painful. Good luck 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,081 Member
    edited December 2017 #13
    linmk, I am sorry to hear the

    linmk, I am sorry to hear the trial did not work for you and you are getting ready for more chemo.  I did not have the mouth sores and I hope what Cheese Queen suggested helps heal them.  Hugs dear one.

  • pinky104
    pinky104 Member Posts: 574
    edited December 2017 #14
    linmk

    It's heartening to know that a clinical trial is in progress with Everolimus.  That is a drug that was approved for use in a defect that was found in me in my genomic testing, but it was approved for another type of cancer, not the UPSC that I have.  I asked my oncologist about taking that or the other drugs approved for some of my other mutations, but he said that since it hadn't been approved for my type of cancer and it was expensive, he thought the insurance companies would not be willing to pay for it.

    I'm also a stage IVb.  I started with my cancer in 2010, when I had Carboplatin and Taxol and went into remission.  The cancer came back with a vengeance this yea, although a very small mass was found in 2014 and watched for a year with scans, and it didn't grow.  I started off taking Carboplati and and Gemzar (Gemcitabine)  in May of this year and had those for most of my treatments, but after an allergic reaction to Carboplatin the 11th time I had it (counting my chemo in 2010), I switched to Cisplatin and Gemzar for the final treatments.  I had two drugs the first week, then Gemzar alone the second, and the third week off except for labs.  I found it tougher this time than the first time.  The Gemzar did a number on me, making my blood levels drop faster than the Taxol did (and the doctor told me that's how it normally works).  I had to have my doses lowered.  But now I'm in remission again.  Since there are no parp inhibitors approved for my mutations that work on my type of cancer, I'm now trying Metformin and Turmeric/Curcumin to try to keep my cancer from coming back a third time, which my GYN/onc. seems to think will happen another 5 years or so down the road. 

    Don't assume you're automatically going to die because you're stage IVb.  I'm not the only survivor on this site who has had that stage.  It may or may not be a losing battle a ways down the road.  Time will tell.  In the meantime, my GYN/onc told me I was very lucky that my cancer only came back in one area as most recurrences come back in multiple small areas, which aren't operable,  and he also said I was very lucky to be able to go through chemo a second time as there are people that can't even tolerate it a second time.  He  said there are people that have been able to have chemo nine times, so I guess you just have to see how your own body reacts to everything.

    My  step-daughter is a teacher and gets canker sores at the beginning of each school year.  Stress can play a part in developing them, and so can allergies.  My step-daughter found that she was allergic to a lot of different things she regularly eats--soy, dairy, wheat, etc.  That probably isn't the case with you--it's just the meds, but I would guess that stress  from the cancer diagnosis might be keeping them from going away. 

  • linmk
    linmk Member Posts: 58
    Followup: Everolimus, Ribociclib, & Letrozole Clinical Trial

    The Everolimus, Ribociclib, & Letrozole Clinical Trial did not help me. The cancer spread and I experienced the dreaded canker sores, a noted side effect of the drugs. The sores began in my throat and at first I thought I just had a sore throat. Then the sores appeared in my mouth and on my lip. I've never had canker sores before and didn't quite know how to deal with them. Gargling with bicarbonate of soda and/or salt solution did not help. The sores are taking some time to go away. The drugs also raised my fasting blood sugars and triglycerides. I think the doctor wanted to put me on statins. Something I didn't want.  Other bad side effects included fatigue and lack of appetite. Also, everything I put in my mouth tasted like sugar.

    I was relieved when the doctor took me out of the study. The clinical trial is still in its early stages. However she said that so far about 40% of those in the study have a positive response. I only wish that I had dropped out of it a few weeks earlier. I am feeling better now, but am still dealing with the mouth sores. After Christmas I start Gemcitabine-Cisplatin chemo treatments. It's a 50-50 chance that it will work. I'm stage iv, so I realize that my chances of surviving more than 15 months are not good. I am not afraid to die. I just want to live well.

     

  • linmk
    linmk Member Posts: 58
    Mouth Sores

    Thanks CheeseQueen57 for the tip about Kenalog. I may ask my doctor to prescribe it if the sores persist. So far the doctor has prescribed Dexamethasone mouth rinse, which I would have had to pay a copay of $56 and then recently Magic mouthwash for $100 out of pocket--insurance wouldn't cover it. Expensive right? I've been trying other over the counter remedies such as Milk of Magnesia, swirling it around in my mouth and applying Benzocaine gel that I got from Dollar Tree. I've also been gargling with a diluted hydrogen peroxide solution. I think that they are all helping plus the fact that I'm no longer on the study drugs will hasten my recovery.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    linmk said:

    Mouth Sores

    Thanks CheeseQueen57 for the tip about Kenalog. I may ask my doctor to prescribe it if the sores persist. So far the doctor has prescribed Dexamethasone mouth rinse, which I would have had to pay a copay of $56 and then recently Magic mouthwash for $100 out of pocket--insurance wouldn't cover it. Expensive right? I've been trying other over the counter remedies such as Milk of Magnesia, swirling it around in my mouth and applying Benzocaine gel that I got from Dollar Tree. I've also been gargling with a diluted hydrogen peroxide solution. I think that they are all helping plus the fact that I'm no longer on the study drugs will hasten my recovery.

    Mouth rinses

    I never found the mouth rinses helpful. The Kenalog in Orabase when used for 2 or 3 nights actually reduced the pain and made them heal. It seems it takes about 3 weeks to heal on their own and their so painful. I think it has a little steroid in it. 

  • linmk
    linmk Member Posts: 58
    Everolimus

    Hi pinky104, My doctor also thought that I would benefit from Everolimus, because it targeted a defect in my genomic testing. I need to ask her more about this. I just looked at the notes from my last appointment. I think the sample is from the tumor recurrence which is present in my vagina.My tumor was positive for PTEN & PIK3CA. The tumor is MSS --microsatellite stable.The clinical trial I was in excluded UPSC and targeted those of us with Type 1, the estrogren driven cancers. The study drugs are anti-estrogens.

    My cancer has recurred in my lower lungs and now I have a new spot on my liver. The tumor near my adrenal gland has grown slightly.

    It's good to hear from you. I wish you continued success with your battle over cancer. Now it's time for me to go roll in my frankincense oil:)

  • linmk
    linmk Member Posts: 58
    edited December 2017 #19

    Mouth rinses

    I never found the mouth rinses helpful. The Kenalog in Orabase when used for 2 or 3 nights actually reduced the pain and made them heal. It seems it takes about 3 weeks to heal on their own and their so painful. I think it has a little steroid in it. 

    Mouth rinses

    I agree. They are painful. I will check with my insurance company to see if it will cover it. Thanks again.

  • evolo58
    evolo58 Member Posts: 293
    edited December 2017 #20
    How are you doing?

    How are you doing?

  • linmk
    linmk Member Posts: 58
    Proud To Be A Bad ****

    Thank you for your inquiry, evolo58. I feel so much better than I did three weeks ago now that I am out of the clinical study and the mouth and throat sores are gone. Yipee!  I'm been relishing eating salsa on my eggs and tacos. I may have to give that up when I undergo the next round of chemo, although I had no problems with eating spicy foods when I was on chemo before. In the meantime, I have been relishing questioning authorities.  Yes, I'm a bad **** and proud of it!:) Proud to question authority but not too proud to accept the facts.

    How are you doing? I wish everyone a brave Christmas and 2018.