NED from Stage IV metastatic endometrial cancer
Comments
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Genetic vs Genomic testing
Here's an article that explains the difference that you might find helpful. I agree with Taking Control, the genomic testing might be real helpful, especially if there's a clinical trial it might point you towards.
http://www.cancercenter.com/discussions/blog/what's-the-difference-genetics-vs-genomics/
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No Radiation Done for my Stage IVbrdifatta said:Stage 4 UPSC
At this point I am confused about my treatment plan. My Oncologist recommended 6 cycles of chemo (21 day cycles/taxol&carbo) Prior to chemo#4 my Oncologist gave results of ct scan
which was "NED". She said that after completion of chemo, a regimen of radiation would begin- 5 weeks/5 days a week. Met with Oncologist again prior to chemo#4, now she is hedging
about radiation; said I should have consult with Radiologist. I am confused as to whether I should have radiation as the doctor is vascillating about it and also because of side effects.
Can any of you describe your treatment plans and how you have proceeded? Of course I don't "want" to have radiation; just want best chance of survival. The literature, much of which is
dated is unclear about how to proceed. Please help. ROSE
I had stage IVb UPSC in 2010 and had cancer in my uterus, both ovaries, the omentum, and even a little bit on the small intestine. I was given 6 rounds of Carboplatin and Taxol after having the cancer removed. No cancer was found in the sampled lymph nodes. As you can see in another thread on this site, I was found to have high ferritin levels three months after completing chemo, and then had to have phlebotomies to remove some of the blood with the high amounts of ferritin in it. I was never even offered radiation. I was under the impression that radiation isn't given when the cancer has spread a lot, as it would damage too large an area.
In 2014, I complained to my family physician's office about abdominal pain. My PA ordered a CT of the abdomen which showed a small mass in the paracolic gutter. I was referred to my GYN/onc. for follow up. He wasn't sure what it was, but said it was too small to biopsy and too small to try to go in and remove. He wasn't sure if he would even be able to find it in there. He ordered another CT at 3 mos., a third at 6 mos., and a fourth at a year. None showed any growth, so he decided it couldn't be cancer because cancer always grows.
This year, I had a hemoccult test thru my family physician's office, and blood was found in one of the three stool samples I provided. That necessitated going to my gastroenterologist for a colonoscopy. The doctor there found something he'd never seen before. The inside of the colon looked fine, but presssing on the outside of the ascending colon, he found a strange-looking mass. I actually thought it looked like a pair of testicles. My husband and I joked about how I'd "grown a pair." I had a PET scan after that and was in the hospital less than a week later having a resection to my colon to remove the cancer before it pressed in so far that it caused a bowel obstruction. I also had another section of intestine taken out as my small intestine had grown into the mesh I'd had put in for an incisional hernia in 2012. Then my abdominal wall was "replaced" with new mesh by a general surgeon. I've been going through chemo since then, which was just finished yesterday. I'm going to add a separate thread about that.
I'm having a PET scan on 9/29 to see how I've done. The scan I had July 21 showed the mass to be a third of its size. My last CA-125 result was 7.9 in late July. After chemo in 2010, my CA-125's were down in the low 7's and then went down to the 6's for a year or two. Last June, they were up in the 9's, and in Feb. of this year they were in the 14's. After that my CA-125 went up 874% in 2-1/2 months, so all the major growing must've been going on then. I have hemochromatosis, which I suspect probably played a role in the development of this cancer.
Hope this helps you determine what to do. I've always been glad that I never had the radiation, in spite of what has happened to me this year. I've heard about burns to the skin and other complications from it.
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supplements plus metforminBC Brady said:Thank you so much for this!
I am so thankful for this site. The fact that you are willing to share your experience is so informative. My genetic testing was so discouraging - 3 markers and no therapies - one with all the worst stats attached to it. But I am living on the "I am a statistic of ONE" mantra and will never stop questioning my treatment.
At Roswell, no one is talking to me about supplements. I will ask about the metformin, but would you mind sending a list of the supplements you are on? I would like to ask my doctors specifically. When asked, they don't offer - they say I'm doing everything I need to do. Maybe if I asked more specifically they would offer some support.
Though I would add to the post- i take several supplements and just started on Metformin for my recurrent endometrial cancer that is inoperable (due to scarring, location, and size) after chemo and radiation. Good news is the my CA 125 is only 9 and the tumor has shrunk by 1/3!! I learned a TON about supplements from that Natural Healing book mentioned earlier, and from Chris Beat Cancer.com. Firm believer that much of my success in no further growth and reduction of mass has been the addition (on my own research) of supplements like Curcumin, D3, Astragalus, Black Seed Oil, Vitamin C, Beta Glucan, KyoGreens, Cruciferous Veggie supplements, B complex, Green Tea, Essiac Tea, plant based foods, nut milks instead of dairy, Oil of Oregano, MSM, and more. My oncologist has repeatedly said i'm one of their highest functioning patients . Even if the supplements don't kill it all, you'll feel confident in doing all you can and you'll feel much better!
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radiationrdifatta said:Stage 4 UPSC
At this point I am confused about my treatment plan. My Oncologist recommended 6 cycles of chemo (21 day cycles/taxol&carbo) Prior to chemo#4 my Oncologist gave results of ct scan
which was "NED". She said that after completion of chemo, a regimen of radiation would begin- 5 weeks/5 days a week. Met with Oncologist again prior to chemo#4, now she is hedging
about radiation; said I should have consult with Radiologist. I am confused as to whether I should have radiation as the doctor is vascillating about it and also because of side effects.
Can any of you describe your treatment plans and how you have proceeded? Of course I don't "want" to have radiation; just want best chance of survival. The literature, much of which is
dated is unclear about how to proceed. Please help. ROSE
hi there. i'll share my experience with radiation. I had 10 sessions of SBRT at UCSF in CA. Only kills the cancerous cells, highly effective for many, much less side effects. In my case, though, it only shrank the tumor by 1/3 so far (which is still great progress). What i didn't realize was that it leaves significant scarring- which makes surgery later very difficult and in my case impossible. So then you're back to medical treatments and alternative approaches.
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That's GREAT!lisewick said:supplements plus metformin
Though I would add to the post- i take several supplements and just started on Metformin for my recurrent endometrial cancer that is inoperable (due to scarring, location, and size) after chemo and radiation. Good news is the my CA 125 is only 9 and the tumor has shrunk by 1/3!! I learned a TON about supplements from that Natural Healing book mentioned earlier, and from Chris Beat Cancer.com. Firm believer that much of my success in no further growth and reduction of mass has been the addition (on my own research) of supplements like Curcumin, D3, Astragalus, Black Seed Oil, Vitamin C, Beta Glucan, KyoGreens, Cruciferous Veggie supplements, B complex, Green Tea, Essiac Tea, plant based foods, nut milks instead of dairy, Oil of Oregano, MSM, and more. My oncologist has repeatedly said i'm one of their highest functioning patients . Even if the supplements don't kill it all, you'll feel confident in doing all you can and you'll feel much better!
I love Chris Wark! Christbeatcancer.com. I just did the free sq. 1 program and dialed in on nutrition even more and added some of those wonderful supplements he mentioned like Amla and Moringa and some you mentioned. We are also juicing. Feeding my body tons of nutrients. Can't hurt right?! All the best to you- keep us posted!! (((HUGS)))
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I had Stage 2 UPSC and myrdifatta said:Stage 4 UPSC
At this point I am confused about my treatment plan. My Oncologist recommended 6 cycles of chemo (21 day cycles/taxol&carbo) Prior to chemo#4 my Oncologist gave results of ct scan
which was "NED". She said that after completion of chemo, a regimen of radiation would begin- 5 weeks/5 days a week. Met with Oncologist again prior to chemo#4, now she is hedging
about radiation; said I should have consult with Radiologist. I am confused as to whether I should have radiation as the doctor is vascillating about it and also because of side effects.
Can any of you describe your treatment plans and how you have proceeded? Of course I don't "want" to have radiation; just want best chance of survival. The literature, much of which is
dated is unclear about how to proceed. Please help. ROSE
I had Stage 2 UPSC and my oncologist did not recommend any radiation after a CT scan showed NED. I made it through three of the six prescribed and I asked him again about radiation and he said not unless the cancer came back.
I think there is a lot of debate about how we should be treated especially with the UPSC.
Love,
Eldri
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This thread very helpful.
This thread very helpful.
I have refused Metformin for diabetes and just manage diabetes with diet, chromium, Optimized saffron (LEF), and I love l-Theanine (Pure Encapsulations) (and supposed to with exercise, which I don't do as much as I should), - refused Metformin all the years before I recently got cancer dx and sx, because of its side-effects. Now, I'll discuss with integrative internist and oncologist to see if it might help without chemo; I'd rather take it than chemo.
I cannot take aspirin. And have many more restrictions (allergies, sensitivities, other, such as pepper, bur much more). My stomach absolutely will not tolerate aspirin.
My doctor is integrative. Says my diet is perfect. Approves of my many supplements.
I am willing to try more supplements, some mentioned in this thread, even if I have some reactions to them (I'd put up with that, rather than chemo).
And instead of doing online cancer research, I should be out walking and exercising. No time!
Those of you who take supplements, what do you take? Can you supplement takers list your supplements?
The best diet/s described in this thread, I already do and have done for decades.
Need to find good massage therapist, skilled, knowing hands, well-trained, in Manhattan.
Thank you.
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I wonder if extreme stress
I wonder if extreme stress plays any role in this, too. The last time I was horrendously stressed, it turned out that I had severe hyperthyroidism that nearly killed me. No exaggeration. I have some very stressful family issues going on right now that began before all this happened.
As my late dentist once said, stress doesn't directly cause a health issue, but it can weaken you and make your body more vulnerable to disease. Makes me wonder if yoga, tai chi, mindfulness, meditation, prayer, guided imagery may not be as much as a placebo as some might think. I'm not saying that practicing any of these will create a medical miracle, but the old addage of striving to be healthy in body, mind and soul may have some importance.0 -
hyperthyroidism
Hey Evolo, I have Graves' Disease which is as you may know is hyperthyroidism. I am in remission now. Knock on wood. Haven't had any since about 4 summers ago. My endocrinologist told me that yes, stress is a contributing factor to thyroid issues.
Just something extreme like the death of a loved one or being told you have cancer, can send the thyroid into a tail spin. I try to stay calm, that's why I use Klonopin.
Extreme hyperthyroidism can be deadly. It elevates the heart and there is weight loss. I remember only weighing 89 pounds at one point. People thought I was anorexic and that was hurtful but Graves' disease is no laughing matter. Not to mention it makes you sweat, and can feel like extreme hot flashes and sometimes even a constant fever.
My medication was Tapazole. And my next step is RAI (radioactive iodine) when it kicks up again which I am praying it doesn't.
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Grave's and Radioactive iodinesaltycandy13 said:hyperthyroidism
Hey Evolo, I have Graves' Disease which is as you may know is hyperthyroidism. I am in remission now. Knock on wood. Haven't had any since about 4 summers ago. My endocrinologist told me that yes, stress is a contributing factor to thyroid issues.
Just something extreme like the death of a loved one or being told you have cancer, can send the thyroid into a tail spin. I try to stay calm, that's why I use Klonopin.
Extreme hyperthyroidism can be deadly. It elevates the heart and there is weight loss. I remember only weighing 89 pounds at one point. People thought I was anorexic and that was hurtful but Graves' disease is no laughing matter. Not to mention it makes you sweat, and can feel like extreme hot flashes and sometimes even a constant fever.
My medication was Tapazole. And my next step is RAI (radioactive iodine) when it kicks up again which I am praying it doesn't.
I had Grave's disease back in 1994 and took radioactive iodine for it. I was fine for 3 mos., then I started getting really itchy legs. It turned out my endocrinologist and my PCP weren't sure how much radioactive iodine to give me and had to guess. They gave me too much, and the itchy legs were a symptom of the opposite problem, hypothyroidism. I've been on Levothyroxine ever since then to bring my thyroid level up to the normal range. My PCP had discussed my case with a surgeon, but he said he didn't know how much of my thyroid to remove, so that would have been a crap shoot, too. I tried other meds but they made me feel uncomfortable. Over the years, I've seen at least a couple of other people on this site who took radioactive iodine. I wondered if the radioactivity had some effect upon our developing our cancers. I was told back then that the drug was safe, but those were like the Dark Ages for pharmaceuticals.
I fully believe that stress causes cancer. I worked at a stressful job and developed my cancer shortly after dealing with a mean boss. My mother got breast cancer twice. The second time was when she had to evict my brother and his nasty wife from her home. A few months later she had a recurrence of her breast cancer after being in remission for almost 10 years. I've run into a few other people on this site who developed their cancer after being under a lot of stress. Look at the old threads from Debra Jo, for example. I'm sure dealing with her ex-husband was very stressful to her (being divorced and living in the same house with her ex wasn't the ideal situation).
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thanks Pinky
The RAI did sound dangerous to me but that was before the uterine cancer thing. My other option is thyroidectomy. No body wants their throat cut but it could be safer. What's a little scar? There is a doctor in Cleveland Clinic that developed a new way. He goes through the armpit. I might opt for that when and if the time comes.
They also say stress ages you. If that was the case, I should be 150 years old after living with my husband! LOL
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I've been nuked as well, and
I've been nuked as well, and am now hypothryoid. I probably would have gone for surgery, but I had young children at home, my husband was working out of state and I didn't have a whole lot of backup that first week or two, and the recovery time from a surgery would have taken too long. I needed to be back in the swing of things ASAP.
In all fairness, I knew of several women who had RAI and did not develop cancer at all. But then again, I remember when serious menstrual bleeding wasn't taken nearly as seriously, and the trend was to try keeping your uterus if possible. (Still is kicking herself for that!) Medical opinions can change. Maybe the women I knew were lucky. You never know when someone is going to say, "_________ caused your cancer" 40, 50, 75 or more years later. Always a great thing to find out.
I believe that stress will ... I'm probably not explaining this well ... find a weak area in your body and wreak havoc on that weakness. That was what my dentist said (may he rest in peace), and I still agree with him.0 -
Interesting about the thyroid
Interesting about the thyroid. I test as hyperthyroid but I don't have any symptoms. My tsh, free t4, etc have gone up since surgery but are still low. My gynecologist-oncologist said there is a correlation between the thyroid and endometrial cancer but it's not fully understood yet. I have a very small nodule on my thyroid but since I have no symptoms, and I'm still going thru chemo, the drs are taking a wait and see approach at this point. My endocrinologist said both the RAI and surgery have a 60-70% chance of not taking out the thyroid so it seems like odds are the same for both.
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Stage IVb uterine cancer
your article lifted my spirits. I’m on my second round of chemo after taxol/carbs took my CA-125 went down to 7 but shot up again 3 months late. I saw a specialist at the University of Chicago and she didn’t give me much hope. I’m now on doxil. How do you find out what supplements to take? I’m becoming desperate and very scared. Thank you.
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Deb17
I strongly believe that integrative cancer treatment is the only way to permanently put advanced
or metastatic cancer in remission. Unfortunately, the standard cancer industry does not believe in this.
They only believe in official cancer treatments.First thing I would say is that no doctor can predict if we live or die. That is in God's hands. I definitely
wouldn't work with a doctor that doesn't give you hope for the future. They have no idea. If they are
saying there is no hope, it is clear that they have never healed a cancer patient with metastatic cancer.
Dr. Gaynor, who I mention above, was well known for treating patients who were told by top cancer
hospitals in NYC that they could not do anything for them but he was able to heal them. There was a
woman who had pancreatic cancer that was such a women that I met in his office during my first visit.
I believe she was written up in Newsweek many years ago- I'll try to find that article.Each patient needs to address the issues in their own bodies. From a supplement perspective, I would recommend
you have your doctor (internist) do a full panel of vitamin, minerals and metals testing to see what you need. In Dr.
Gaynor's last book "The Gene Therapy Plan" he lists all the supplements he gave to every cancer patient-
with the caveat that certain suplments may be more important than others for a given individual.
I would suggest you try to find a naturopath or integrative oncologist who can put you on all the
supplements that would be appropriate for you. I'm on about 45 right now, though some I've added
over the years to keep other parts of my body healthy.Here is the list of supplements- I take all of them except artichoke extract and bee propolis
D-limonene
Magnolia extract
DIM
Maitake D fraction (best to boost the immune system)
Shitake extract (boosts immune system)
Chaga mushroom (boosts immune system)
Oil of Oregano (antibacterial)
Vitamin D3 (many cancer patients are low in this)
Skullcap
Black cumin seed oil
Bee Propolis
Artichoke extract
I also highly recommend Curcurmin (from Turmeric) and bosswelia and anti-inflammatory.
I also us Vita PQQ which targets the mitochondria- the powerhouse of our cells- you want
your mitochondria working perfectly. I also take supplements for my liver (many cancer
patients have compromised livers- all the toxins in our body go through the liver so it needs
to be in working order - also the liver is the key site of metastasis- I had metastases in my liver)I would also recommend you speak with your doctor about getting on metformin now, while
you are getting chemo. The sooner the better. Since you read my story above, I originally
entered a trial (that is still ongoing, ends in Sep 2019) that added metformin or a placebo
to the Taxol/Carbo. They are testing for certain mutations of the PI3K pathway, which is
mutated in over 80% of all endometrial cancers. It regulates energy production and insulin.
I had one of those mutations. There is no reason to wait for the results of the trial when
you need help now- that is why I pulled out of the trial after one month and Dr. Gaynor put
me on the drug -because I needed to be on the drug for my insulin resistance and metabolic
syndrome, key causes of endometrial cancer.The problem with only using cancer treatment is that it is designed to kill a tumor or cancer cells.
It doesn't address what makes new cells turn cancerous in the first place. I believe the chemo
helped kill the many tumors I had after surgery (though I still had 2cm left after chemo) but it
is the metformin and all the other things I am doing that are keeping me cancer free. Think of
it this way- you have to treat cancer on the front end and the back end. Just killing a tumor
does not stop new cancer cells from forming. That is why you have to determine what is making
cancer grow in your body and treat those conditions.
I'll be happy to go into more detail with you if your would like. You can e-mail me if you have more specific
questions.Takingcontrol58
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Thank youtakingcontrol58 said:Deb17
I strongly believe that integrative cancer treatment is the only way to permanently put advanced
or metastatic cancer in remission. Unfortunately, the standard cancer industry does not believe in this.
They only believe in official cancer treatments.First thing I would say is that no doctor can predict if we live or die. That is in God's hands. I definitely
wouldn't work with a doctor that doesn't give you hope for the future. They have no idea. If they are
saying there is no hope, it is clear that they have never healed a cancer patient with metastatic cancer.
Dr. Gaynor, who I mention above, was well known for treating patients who were told by top cancer
hospitals in NYC that they could not do anything for them but he was able to heal them. There was a
woman who had pancreatic cancer that was such a women that I met in his office during my first visit.
I believe she was written up in Newsweek many years ago- I'll try to find that article.Each patient needs to address the issues in their own bodies. From a supplement perspective, I would recommend
you have your doctor (internist) do a full panel of vitamin, minerals and metals testing to see what you need. In Dr.
Gaynor's last book "The Gene Therapy Plan" he lists all the supplements he gave to every cancer patient-
with the caveat that certain suplments may be more important than others for a given individual.
I would suggest you try to find a naturopath or integrative oncologist who can put you on all the
supplements that would be appropriate for you. I'm on about 45 right now, though some I've added
over the years to keep other parts of my body healthy.Here is the list of supplements- I take all of them except artichoke extract and bee propolis
D-limonene
Magnolia extract
DIM
Maitake D fraction (best to boost the immune system)
Shitake extract (boosts immune system)
Chaga mushroom (boosts immune system)
Oil of Oregano (antibacterial)
Vitamin D3 (many cancer patients are low in this)
Skullcap
Black cumin seed oil
Bee Propolis
Artichoke extract
I also highly recommend Curcurmin (from Turmeric) and bosswelia and anti-inflammatory.
I also us Vita PQQ which targets the mitochondria- the powerhouse of our cells- you want
your mitochondria working perfectly. I also take supplements for my liver (many cancer
patients have compromised livers- all the toxins in our body go through the liver so it needs
to be in working order - also the liver is the key site of metastasis- I had metastases in my liver)I would also recommend you speak with your doctor about getting on metformin now, while
you are getting chemo. The sooner the better. Since you read my story above, I originally
entered a trial (that is still ongoing, ends in Sep 2019) that added metformin or a placebo
to the Taxol/Carbo. They are testing for certain mutations of the PI3K pathway, which is
mutated in over 80% of all endometrial cancers. It regulates energy production and insulin.
I had one of those mutations. There is no reason to wait for the results of the trial when
you need help now- that is why I pulled out of the trial after one month and Dr. Gaynor put
me on the drug -because I needed to be on the drug for my insulin resistance and metabolic
syndrome, key causes of endometrial cancer.The problem with only using cancer treatment is that it is designed to kill a tumor or cancer cells.
It doesn't address what makes new cells turn cancerous in the first place. I believe the chemo
helped kill the many tumors I had after surgery (though I still had 2cm left after chemo) but it
is the metformin and all the other things I am doing that are keeping me cancer free. Think of
it this way- you have to treat cancer on the front end and the back end. Just killing a tumor
does not stop new cancer cells from forming. That is why you have to determine what is making
cancer grow in your body and treat those conditions.
I'll be happy to go into more detail with you if your would like. You can e-mail me if you have more specific
questions.Takingcontrol58
thank you so much for all this informatio. I‘ve Just been feeling like there’s just not much hope for me, that’s why your story helps. Can I get these supplements on line.
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RAI and Graves’
I was diagnosed with Graves’ Disease in 1999, and chose the radioactive iodine route. I now have hypothyroidism and take levothyroxine, two different doasages alternating. Mid-October of last year I started spotting. (8 years psot menopause.). Called the doctor the next morning, and had an u/s two days later. Less than an hour after the u/s, they called me and told me I needed a biopsy because of thickened lining. At that point, they were telling me I couldn’t be seen for a biopsy until mid-December. I protested, mightily, and said I couldn’t wait that long. They got me in the following week and on November 10th, was told I had cancer. I was referred to a gyn-onc at the UW Carbone Center. December 13 Complete hysterectomy, including lymph nodes, tubes and ovaries. Stage 1a, Grade 3. I’ve since completed two rounds of Taxol/carbo, and have 4 more to go plus radiation. It will be interesting to see what the future holds for research with thyroid issues and cancer. Stay strong, one day at a time! We are warriors!!!!
Marcia
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Deb17 - supplementsDeb17 said:Thank you
thank you so much for all this informatio. I‘ve Just been feeling like there’s just not much hope for me, that’s why your story helps. Can I get these supplements on line.
I purchase most of the supplements I use from a pharmacy in NYC. They ship me the supplements.
The pharmacist worked with Dr. Gaynor (my first integrative oncologist who passed away) and works
with my current integrative oncologist.Let me know if you would like the name and number. Some supplements I purchase online
at a website called vitacost.com. But most of the ones I mention above I purchase through
the pharmacy. Some of the more unusual ones find I have to purchase through the pharmacy.
But I do purchase the DIM, Vitamin D, Vitamin B12, Maitake D fraction and they sell
the Blackseed cumin oil on the vitacost site.Takingcontrol58
0
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