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Uterine Stage IV B Reoccurence Vagina

linmk's picture
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?

EZLiving66's picture
Posts: 1448
Joined: Oct 2015

I am so sorry, Kathy!  You have fought this fight for so long.  I hope the new treatment works to shrink the tumors so you can have the surgery and do the repairs.  Please let us now how things are going!!!



TeddyandBears_Mom's picture
Posts: 1700
Joined: Jun 2015

Kathy, So sorry to hear this news!  Please come back and let us know what the next steps will be. I sure hope it works out so that your tumors shrink to minimize the surgery.

Linmk, wouldn't it be great if you could challenge your docs about this MSI treatment and it ends up being the thing that works for you?!

Thinking of you both and sending strength and prayers your way.

Love and Hugs,


Posts: 572
Joined: Oct 2009

Oh Kathy! I too am so sorry to hear your endometrial cancer has come back after so many years. I just wanted to tell you that I will keep you in my prayers. I also was diagnosed back in 2009. Stay strong....I fear a reoccurrence too....


Posts: 1525
Joined: Jun 2012

what can I say.  I so admire the strength you have shown in the past  and hope it serves you well as you have to face future treatment. 

Posts: 296
Joined: Oct 2017

Kathy, I am so sorry to hear about your news. I hope that MSI testing will create a few viable alternatives. Wishing you the best of luck. I am so in awe of you for trying to make sure your family lives a normal life and continuing to enjoy your life as a mother & wife even at the face of these challenges. You are a true inspiration. None of this is fair. 

Posts: 264
Joined: Oct 2017

Kathy, I'm so sorry it's back. Praying for you!

Jairoldi's picture
Posts: 221
Joined: May 2017

Wishing you all the best as you battle the beast again.

linmk's picture
Posts: 58
Joined: Sep 2017

I have been recovering from bronchitis during the past week. Recommendation: (Don't let relatives with coughs visit you.) I'm stocking up on antiviral masks for future visits.

This week I'm going to talk to the investigational clinical trial people at MD Anderson about the possibility of participating in one of their phase 1 clinical trials. I won't be convinced unless I know that all of the mice in the mouse studies had their cancer cured. I'm not overly optimistic about participating because I don't want to suffer through yet another type of treatment that will do nothing for me except cause bad side effects. The alternative is to be treated by weekly taxol/Avastin chemo sessions. I wish there was a way that the doctors could tell if a treatment was going to work before undergoing it.

I asked the doctor about Parp inhibitors and other specific immunotherapy drugs but she said that they weren't approved for uterine cancer. Also, she said i only had a few estrogen receptors on my tumor, so I'm not a candidate for hormone therapy.

I read a NY Times article about a small group of women who had convinced doctors to give them an immunotherapy drug, even though there was no reason to think it would work, but it did, and now there are clinical trials for the drug. I am wondering how does one persuade a doctor to give you an immunotherapy drug that is not approved for your type of cancer, unless you're related to the doctor?

This is the article link https://www.nytimes.com/2018/02/19/health/ovarian-cancer-immunotherapy.html?mabReward=ART_TS2&recid=10mbUDeKa0L2lXFUyRFmSt153V2&recp=2&moduleDetail=recommendations-2&action=click&contentCollection=Smarter%20Living&region=Footer&module=WhatsNext&version=WhatsNext&contentID=WhatsNext&src=recg&pgtype=article

Armywife's picture
Posts: 440
Joined: Feb 2018

What a challenge.  I wish you the best as you investigate the investigative folks!  

Just to clarify, your MD Anderson doc said uterine cancer isn't eligible for Keytruda?  I thought it was approved for all MSI cancers.  

linmk's picture
Posts: 58
Joined: Sep 2017

MSI is relatively rare. I have MSS, the most common result in genome testing. Keytruda is not intended for MSS.

Posts: 261
Joined: Jan 2016

Recent studies are indicating that immunotherapy drugs may work on people who have lots of mutations.
Have you done full genomic profiling on your tumor (eg. through Foundation One) so you know how many
mutations you have?

Unfortunately, they don't know why some people respond and some people don't. They are now starting
to give people two immunotherapy drugs or one immunotherapy drug plus chemo or radiation if you
read the articles in the medical journals.

Immunotherapy drugs actually work against  the immune system, by disabling proteins that protect all
our cells from being attacked by the immune system.  One of the risk factors is that these drugs will remove
the protein from our normal cells as well - here is one of the key side effects listed from Opdivo in the
ads they run in women's magazines-

"Opdivo is a medicine that may treat certain canacers by working with your imune system.
Opdive can cause your immune system to attach normal organs and tissues in any area of your body
and can affect the work they work.  These problems can sometimes become serious or
life-threatening and can lead to death.  These problems may happen anytime durirng treatment or even
after your treatment has ended."

I would look up the manufacturer's websites to get more information on various immunotherapy drugs,
like Keytruda or Opdivo or the drug you want to try.

I personally believe that patients should fully investigate all these drugs that doctors recommend,
as they don't really explain what they do and what some of serious side effects can be.  I believe
that these proteins exist on our cells for a reason and that all the drugs they are trying to develop
disable key processes in our body that are there for a reason- to protect us. That would explain
why these drugs can attack normal cells as well- immunotherapy reminds me of chemotherapy-
the drugs can't distinguish between normal cells and cancer cells.

If you really want to pursue one of these drugs, I recommend you ask your doctor to apply for the
drug for you as a "compassion case".  This way the manufacturer will cover the cost.  Considering
there are not trials for endometrial cancer and immunotherapy, they might be interested in seeing
how you respond.   What drug are you looking to take? Is it a new immunotherapy drug?

Remember, you have to target much more than your immune system to stop cancer. I believe
this is why they hav not had better results with these drugs, which are incredibly expensive. 

There are excellent supplements that boost the immune system- the medicinal mushrooms are
known to be the best - Maitake D fraction, Shitake, Chaga and Coriolus (turkey tail mushroom).
I've been using these supplements for over 3 years now and have remained in remission.

Besides boosting your immune system, you have to address the front end- what is making
cancer grow in your body in the first place.  That requires a full analysis of your health and
lifestyle. Alot of the changes that need to happen aren't addressed by cancer drugs.




linmk's picture
Posts: 58
Joined: Sep 2017

Takingcontrol58, I appreciate the detailed response. Obviously, I need to do much more research on the drugs and their side effects that the oncologists are recommending for me. I thought that I was being cautious, but in retrospect I've been blindsided by some of the side effects that have occurred. MD Anderson conducted genomic testing of my tumor, but a week ago I asked Foundation One to conduct testing on my tumor. I have heard that it conducts additional tests than MD Anderson. I am waiting to hear back from Foundation One. One forum member shared with me the results of her Foundation One report. We share a common mutation. According to that report, Parp inhibitors, were suggested as a possibility.  I need to look into that in more detail. My doctor told me that they were not approved for treating uterine cancer, but perhaps under "compassionate care" that could be an option.

I like where you're going with the mushrooms. I love them, but I don't eat enough of them. Maitake (grifola frondosa) also known as hen of the woods sounds particularly promising. I've seen fresh hen of the woods mushrooms sold at a local upscale grocery for $24.00 a pound. Fresh and dried shitake mushrooms are relatively cheap and easy to obtain. I will need to do more research on mushroom supplements.

I have been examining my food intake recently. I eat local grass fed and pastured meats and eggs, but its only recently that I switched to eating fresh organic celery and organic romaine lettuce from conventional grown vegetables due to the large number of pesticides on the conventional grown vegetables and fruits. Also, I've been incorporating more avocados into my diet.--Avocado lettuce wraps --not avocado toast. Thanks again for your response.

Tamlen's picture
Posts: 275
Joined: Jan 2018

I've become interested in mushrooms for immune systerm support as well, particularly chaga and coriolus versicolor (known as yunzhi or more commonly, turkey tail).

Our 7-year-old dog was diagnosed with the highly aggressive and always fatal hemangiosarcoma in April 2015 after we accidentally and luckily discovered her spleen was about to burst. Our vet canceled appointments and got it out of there before the cancer cells went everywhere. We proceeded with chemo, which our dog scarcely seemed to notice, and our vet recommended we put her on an alternative therapy of polysaccharopeptide (PSP) synthesized from coriolus versicolor mushroom; Penn Vet School had just released promising results of a small, early study. Hemangiosarcoma is well established by the time it's discovered, and most dogs succumb, even with chemo, in 3-6 months. In three weeks our dog will have survived for 3 years, an extremely rare occurrence. Penn Vet is scheduled to release results from a larger study late this year.

Is it the mushrooms? We'll never really know for sure, but it tweaked my interest and I've started searching out human studies. And raiding my dog's supply (the capsules are human grade, I'm-Yunity brand), with my gyn/onc's support.

CheeseQueen57's picture
Posts: 936
Joined: Feb 2016

I’m sorry you’re having to go through this. Doctors prescribe off label all the time. I don’t know what compels some to do it. I’ve been trying to get my doc to prescribe Metformin, a rather low risk drug, forever and she flat out refuses. If the risk/ benefit works out why not?  I guess just keep hitting them with what have you got to lose?  

linmk's picture
Posts: 58
Joined: Sep 2017

I have diabetes, type II. I do my best to keep tight blood sugar control. When I asked for metformin, my original family doctor prescribed too low of dose. One needs at least 1500 mg to even make a slight dent in decreasing blood sugars. I resorted to ordering generic metformin from an Indian drug company to increase my dose. Most generic metformin is not as consistent in action as the name brand Glucophage. It was only last year that I was able to get a new doctor and my new drug insurance company to agree to give me the name brand. I think it helped that my MD Anderson oncologist had done studies on treating cancer with metformin and chemo. She was not the one who prescribed it though. It was a new general practioner at a new clinic that came through for me. She agreed with me that generic metformin can act inconsistently in controlling blood sugars.

I ordered my metformin from alldaychemist https://www.alldaychemist.com/glycomet-sr-500.html

CheeseQueen57, we're both in tough spots. I hope that you're doing well. I appreciate  you taking time to respond.

NoTimeForCancer's picture
Posts: 2826
Joined: Mar 2013

linmk, CheeseQueen, derMaus, Lou Ann....you ladies are an inspiration.

Posts: 261
Joined: Jan 2016

Linmk, Tamlen,
That is great news about your dog.  PSK mushrooms are well known to boost
natural killer cells.  I also give my dog supplemnts of the beta glucans and
curcurmin to prevent cancer.

Here are the brands of mushroom supplements I use:
I have been using them all for 3 years now:

Maitake D Fraction - Mushroom wisdom - is a liquid I put in my daily smoothie
Chaga -  Host Defense
Shitake - Completely Green (brand from the pharmacy I use)
Turkey Tail Coliolus PSP - Mushroom Science

This is from Life Extension-
"in a clinical trial evaluated the effects of PSK in individuals with uterine
or cervical cancer, study participants received postradiation therapy PSK 
(3grms daily) for 2 weeks per month.  The 5 years survival in those with
Stage 3B cancer who received PSK was 65% compared to 49% in those
not receiving PSK."

They say the maitake mushroom appears to be the most effective against
cancer. In Japanese it means "dancing mushroom." Need to take as a
liquid to be effective.

Mushrooms have been used in Eastern medicine for thousands of
years.  Why do Western doctors disrespect Eastern medicine?

Linmk, you can use medicinal mushrooms to boost your immune system.
I love mushrooms, but don't think you can eat enough of the real ones to
get enough of what you need to boost your killer cells.

Don't worry about the immunotherapy drug so much. There are many ways
to boost your immune system.  Going more organic in the diet is a very
good thing.




Tamlen's picture
Posts: 275
Joined: Jan 2018

Thanks for the list of mushroom supplements and brands you use, Takingcontrol58. Very helpful!

If you're interested and like coffee, Four Sigmatic makes an excellent chaga and lion's mane coffee -- real coffee beans mixed with mushrooms. I drink one cup daily as my regular coffee. The company owners also wrote a cookbook for using various medicinal mushrooms. It's got delicious recipes and a very nice overview of each of each mushroom and its uses.

linmk's picture
Posts: 58
Joined: Sep 2017

on all the mushroom supplements and brands. Who knew? I didn't. Mushroom coffee is a new one to me too. I like organic light roasted coffee on occasion.

linmk's picture
Posts: 58
Joined: Sep 2017

I will be undergoing pre-screen testing for another clinical study in a few weeks. It's study 2017-0014, a Phase I/II Study on Avelumab and PF-04518600 at Md Anderson. My gynecological oncologist recommended me for the study. You have to be a patient at MD Anderson in order to qualify. I asked about using mushroom extract and was told that they didn't want me to use any herbal supplements. I do however use a number of vitamin supplements as well as Glucophage (metformin) and they Oked them. I will continue to improve my diet and exercise routines as I am physically able to do so. Some days, I just don't have energy to do much. Now that the bronchitis is going away and I am taking iron supplements and vitamin C to improve my anemia, I should have more energy.  I was told that the Avelumab removes a protective shell around the cancer so that the immune system recognizes it as foreign and attacks it. We'll see. If you know anything about these two drugs please let me know. TIA

Tamlen's picture
Posts: 275
Joined: Jan 2018

linmk, I was just reading about this new approach the other day. These articles came through on a science research feed I follow; both relate to Avelumab:



I subscribe to the journal Nature Communications, so if you want to read the full article referenced in the second link, let me know.

LisaPizza's picture
Posts: 328
Joined: Feb 2018

Linmk , that sounds interesting. I now, the last thing anyone wants to be is medically interesting! But I really hope you have a great response.

Posts: 261
Joined: Jan 2016

website of manufacturer of Bavencio (Avelumab) - it is always good to look up the information from the manufacturer- they list all side
effects as wel. This drug is fairly new, from 2017.



Here is an article on how metformin already addresses the key pathway that Avelumab attempts to address:  TGFb (transforming growth
factor-b signalling pathway).  So it is good that you are on metformin.   As you start to look at what all these new drugs attempt to do, they
are trying to address many of the processes that metformin already addresses. 


I'm curious if the trial will track the patients who get the Avelumab with metformin- and Avelumab without metformin, to see if the metformin
makes the drug work better, just like the trial I was in that added metformin or a placebo to the standard Taxol/Carbo, to try to make the chemo work


linmk's picture
Posts: 58
Joined: Sep 2017

Thanks Tamien and takingcontrol58 on the trial drug info. According to the links posted by Tamien. There was only a 20% positive response to the avelumab when given by itself. I will be started on PF-04518600 every two weeks by itself for the first two infusions. PF-04518600 targets the OX40 receptor on memory T cells. https://immuno-oncologynews.com/pf-04518600/. Then, on the the third cycle after the PF-04518600 has been given a chance to work, I will be infused with avelumab by itself. I am one of 14 people in this particular arm of the study.

I am still studying maitake mushroom extract as a treatment. I'm on lovenox blood thinner, so I have to consider what effect it may have on that. Maitake is not recommended for people on warfarin. http://healthyeating.sfgate.com/risks-maitake-mushroom-supplements-10999.html



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