CSN Login
Members Online: 4

You are here

Uterine Stage IV B Reoccurence Vagina

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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?

bluehyacinth
Posts: 45
Joined: Feb 2016

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's picture
linmk
Posts: 58
Joined: Sep 2017

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's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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's picture
linmk
Posts: 58
Joined: Sep 2017

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's picture
EZLiving66
Posts: 1357
Joined: Oct 2015

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

CheeseQueen57's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

Hi Linmk

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

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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.

ForT1
Posts: 4
Joined: Oct 2017

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.

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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.

evolo58
Posts: 293
Joined: Dec 2017

So ... your stage 4 must have been because something occurred outside the uterus, and the chemo zapped whatever it was? But ... gosh, this disease is annoying. Inconsistent and annoying.

This is where staging can get really, really confusing. Apparently, according to the doctors, if you are Stage 2 and have a reocurrence, you're still a Stage 2. I've read of women saying that they were Stage 2 in 2010 and became Stage 4 in 2016, and really, that isn't the case, according to my nurse. You're a Stage 2 with a reoccurence. You will always be Stage 2. And that reoccurence won't give anyone more of a break than a Stage 4B, and once you have it, you're at a similar risk to a Stage 4, even though you're still a Stage 2. Sad.

You can be a Stage 4, on the other hand, and not ever have a reoccurence. One board member's neighbor had this situation for 25 years plus. Yet, you're still a Stage 4 ... 25 years later. 

Too bad there isn't a "provisional" or "Stage as of last diagnosis" level. But I guess that's what NED is for. 

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

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. 

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

The

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.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

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's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

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
Posts: 574
Joined: Feb 2013

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's picture
linmk
Posts: 58
Joined: Sep 2017

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's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

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's picture
linmk
Posts: 58
Joined: Sep 2017

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

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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:)

evolo58
Posts: 293
Joined: Dec 2017

How are you doing?

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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.

evolo58
Posts: 293
Joined: Dec 2017

Sounds about as good news as you can hope for, and hopefully, you can rest a little over the holiday season. You have been through so much ... a little fun and salsa for a little while sounds like a great idea! 

I'm finding that bit out about questioning as well. Wait ... WHY do I "have" to accept dire outcomes? I understand it's not puppies and unicorns and rainbows, and that Stage 4B UPSC (diagonsed) is brutal ... but WHY should I just cower in a corner? Why can't I expect my medical staff to be as committed as I am to living a longer life? I see many ladies here with such doctors and medical personnel. I fear it will make a big difference in future treatments for me. I want doctors to fight WITH me on this. This is why I am really considering that second doctor for my surgery and follow-up. (I see you've been having problems with certain doctors yourself.)

I hope you now have doctors are also dedicated to having you live with this as long as they can provide for you ... and longer. Much longer.

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

You are right...you need a doctor who is committed to your wellness...and making you feel like he/she is fighting along with you...a fellow warrior...

I'm blessed to have 2 such doctors...my gyno oncologist never once spoke about life expectancy or any of the bad stuff and she told me not to google...and I know she and my pharmacologist did all they could before handing me over to my amazing radiology oncologist. He is named Angel...so I have an Angel. He was so worried I was going to back out of radiation that he called my gyno oncologist and told her "I don't care who she goes to but please make her do it because it is the only way we can give her a future". He's totally invested in helping me---so much so he stays late for scan results and studies them closely (that's how he found my cancer in my neck lymph glands even though the radiologist who read the scans missed it). He once spent a weekend double checking my scans. I have a team. They fight for me.

You deserve the same evolo58...you deserve to have a doctor that makes you feel like you are a priortiy and that he/she can give you a future...if you don't feel that way now find someone who does if you can...I wish I could send my Angel to you...

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

Last week I went for a CT scan. A large pulmonary embolism was found near my heart, and when I was taken to the emergency room another clot was found in my upper right leg by ultrasound. I was hospitalized for two days and put on blood thinner. The doctors started me on drip heparin and then on the second day Lovenox injections twice a day which I will have to take forever. Also, on my second night I ran a fever, and the doctors decided to keep me hospitalized for an extra day. They found that I had a UTI and started me on antibiotics, levofloxacin. So my trip to get a CT scan turned out differently than what I thought it would.

 

My cancer is worsening. I knew that a month ago and I informed the doctor, but she insisted that I go through another month of gemzar/cisplatin chemo. I have not had blood clots before. I did feel weak before I went for the CT scan, but I thought it was anemia. I also had a dry non-productive cough which I attributed to allergies. I think the worsening cancer, the gemzar/cisplatin chemo which weakened my immune system and did nothing to halt my cancer and the UTI all contributed to my pulmonary embolism (PE). I am still waiting to talk to the doctor about future treatments. I am definitely going to put my foot down and refuse to complete a treatment if I know it is not working and/or if the side effects are too severe. I feel pretty good today as I type this, but I don't want to live with constant fatigue. Fortunately, I have no pain and I want to keep it that way. The doctors call my PE, an asymptomatic pulmonary embolism. My embolism is a collection of clots not just one clot. I think it's been developing since at least the last month. It will probably take a very long time to dissolve.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Oh, crap. You are a trooper and dealing with so much; I thank god it's not active pain, though. Lack thereof is definitely a good sign. I'd put my foot down, too, if I were you: it's a vicious cycle where the drugs they give you in an attempt to cure your disease wind up weakening your system such that the disease can progress. It's totally illogical. Refresh my memory - did you have Foundation One testing? 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Never mind, I read back and you did have F1 testing. Sorry for my lack of focus. B

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

MD Anderson tested 134 genes with overlap.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

linmk, I am so sorry to hear what has happened.  Please take care of yourself while the clots dissolve.  

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

I appreciate your sympathy NoTimeForCancer.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1552
Joined: Jun 2015

linmk, Wow! What a time you have had. I'm so sorry to hear this. Glad you are feeling better and really glad to hear your spunk! You continue to fight for yourself. No one knows your body like you do. I hope you heal quickly and can find a solution that gets all of this under control. Please come back and let us know how you are doing.

Love and Hugs,

Cindi

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

Cindi, I appreciate your support.

CheeseQueen57's picture
CheeseQueen57
Posts: 813
Joined: Feb 2016

So sorry you are going through all this. Do you think maybe eventually they will let you go on something like Eliquis instead of the shots. I hated those. Stay strong!  

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

Thank you for your support CheeseQueen57. I don't know anything about Eliquis. I don't mind giving myself shots in the stomach. I feel no pain. My sister has been on Lovenox for sevreal years for Protein C deficiency. It's a genetic trait that I don't have myself. She has developed hematomas from it. I hope that the doctors are doing all they can to help my friend. Be sure to tell us about  your trip to Florida when you return.

Armywife's picture
Armywife
Posts: 315
Joined: Feb 2018

Thank you so much for the update.  I'll pray that your doctor works with you to find the best way forward.  I'm impressed with your matter-of-fact attitude and the way you advocate for yourself.  I've learned a lot from you!

Northwoodsgirl
Posts: 536
Joined: Oct 2009

I just read your posting. My thoughts are with you as you try to decide what is best for you. There are no easy answers. God how I wish no woman would ever be diagnosed with cancer again. ((Hug))

Lori

SF73
Posts: 276
Joined: Oct 2017

I am so sorry that you are going through tough times, Linmk. I was wondering.. Since you are Type 1 endometrial cancer. Have your doctors considered any hormonal treatment? Did they test the hormonal receptors of your tumor? Regardless of their responsiveness I think hormone therapy is a low risk treatment and cannot hurt to try. Wishing you the best!

evolo58
Posts: 293
Joined: Dec 2017

I hope you find SOME way to shake this beast off your tail.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

I’m so sorry to read this. I had a PE many years ago and it’s no fun. It is something I worry about a lot though I’ve never had another one. Chemo alone thickens the blood. While I had the shots I was later put on pills instead for about 6 months with testing every month. Prayers that your extreme problems are solved.

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

I appreciate your thoughts and also any advice you have. You're wondeful.

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

I've been asked how I knew that my cancer was getting worse. I knew because I have two exphytic ball shapped tumors growing out of my vagina. I could physically reach down and feel them growing outwards. Gemzar/cisplatin definitely were not shrinking them. I jokingly told the doctor that I would need a jock strap if the balls grew larger. Who knows maybe I'll grow a penis too. That would be a real transformation.

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

You have a great sense of humor, so I'll add onto it: if you do succeed in growing a penis, your income will automatically increase by 42% and people will listen to you in ways they never have before. You might as well get some benefit out of all this BS  ;)  But seriously, that must be unnerving as all get out. Know that you are in my thoughts and prayers. B

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

That's hilarious! I'd rather laugh about it than cry. Thanks for keeping me in your thoughts. I wonder how many other women develop these external vagina tumors. Well, anyway it is what it is.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

Glad to see, somehow, you keep a sense of humor about it.  I can't even imagine what his reaction to what you said, but I can tell you my office must wonder just what the heck I am laughing about.  

EZLiving66's picture
EZLiving66
Posts: 1357
Joined: Oct 2015

Holy crap, I just read this thread and you are a wonder woman!!  You have been through so much and you can still laugh.  I have no words of wisdom or suggestions for treatment but I want you to know I'm here along with all these wonderful ladies, supporting you all the way. (((linmk)))

Love,

Eldri

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

 I wish we could all get together in the same physical room instead of the internet one. Can you imagine the dark humor and laughter?

Kaleena's picture
Kaleena
Posts: 1975
Joined: Nov 2009

Hello Linmk:

My biopsy just came back positive for endometrial adenocarcinoma again.   The tumor is attached to my rectum, bladder, vaginal cuff area.   I just saw the surgical oncologist today.   They are going to test my pathology to see if it is reactive to something called MSI.   If it is, I can do immunotherapy to help shrink the tumor.   I will know in a week if that is possible.   I will probably still need surgery, but this could help the surgeon in reconstructing my rectum.  Maybe check this out too.

My best to you.

Kathy

evolo58
Posts: 293
Joined: Dec 2017

Hope everything works out OK. You have been through so much over the last decade or so!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2591
Joined: Mar 2013

I'm sorry to hear about your biopsy and where the tumors have been found, Kathy.   You are, of course, in my prayers

MugsBugs
Posts: 109
Joined: Jan 2018

I am so so sorry!  I pray that the MSI shrinks the tumor so the surgery is not too invasive!  Good luck !

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Ah crap, Kathy, I'm so sorry to hear that! At least it's all in the same neighborhood, so to speak, and not showing up as distant mets -- but that's poor comfort. When they do MSI testing, they check for Microsatellite Instability to see if any of your four "mismatch repair", i.e. quality control, genes are broken. Those genes weed out bad copies of new cells but, if they themselves don't work, viola! Cancer. The breaks can be just random (i.e. somatic) or inherited (i.e. germline). If they're inherited, then you have Lynch syndrome. My original path report showed my cancer had a high incidence of MSI, so I was sent off for Lynch testing which was, in turn, positive.

Microsatellite instability is actually positive in that the prognosis is a little better (although "better" is relative in our world) and, most importantly, the FDA has approved Keytruda/immunotherapy for any cancer with MSI markers. So you actually want your tests to come back that way, if at all possible. I'm going to cross my fingers and pray for that outcome for you. Meanwhile, was there any discussion of stereotactic (e.g. CyberKnife) radiation? My recent experience with it was pretty painless, although how well it worked remains to be seen at the next PET scan. Prayers, B

Pages

Subscribe to Comments for "Uterine Stage IV B Reoccurence Vagina"