Endometrial Serous Carcinoma stage 3C
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Hello and Thank you for your responses. Every reply, It's bringing comfort and hope. I have started Doxil yesterday, and it's not easy on my body, already beat up by Carboplatin and Paclitaxel that didn't work.
Please keep me in your prayers and thank you for everything.
M
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I'm glad that you decided to try Doxil since the earlier chemos didn't work for you. But remember what I wrote earlier - the doctor and oncology nurses have additional type of supportive care that can help with side effects. In my case it was extra steroids, fluids and antiemetics after the phase 2 infusions. That extra support helped me get through the tough regimen.
Keeping my fingers crossed that this will finally shrink the tumor enough for surgery.
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Hi Miha
I am new to this website, this is only my 2nd visit. However I am replying to your post because 2 years ago I was diagnosed with stage 3C endometrial high grade serous cancer also.
I also had 2 rounds of carbo/taxal chemo, radiation on my pelvis and brachy radiation in my vagina.
Although I didn't reach remission I was responding to treatment, so my doctor who originally told me I also was not eligible for surgery decided to do surgery on me. I have now had 2 surgeries, unfortunately one was from the side effects of the chemo however.
I also just recently finished a 6 cycles of doxel chemo, but that was not effective so I am now going on a MEK inhibitor which will target 2 of my mutated genes.
That is why some of the other ladies wondered if you had genetic testing.
I got a second opinion also and actually was lucky enough to change doctors at the current hospital I am at because my 1st doctor went on a sabbatical. Luckily her boss was able and willing to take over my case because I was reacting so positively to the chemo treatment.
My only frustration is that I have not gone into remission after 15 chemo cycles, full radiation, vaginal radiation and 2 surgeries. But everybody's postings here have been so optimistic about keeping fighting that they are inspiring me too keep pushing on.
I also feel very blessed at times with all the support from my friends and family and now the posts here on cancer survivor's network. Thank you to all of you for your posts and support for us newbies.
Miha, I guess what I want to say is even though you were initially told that your cancer was too widespread to operate, that may change if you respond well to chemo.
Track your CA125 and if that doesn't change much ask for EA4 test. The EA4 test specifically tracks cancer growth where as the CA125 can be influenced by inflammation in your body. For my particular body the CA125 test does not show whether I have growing cancer or not.
Also if your current doctor, who it sounds like is a male, refuses to operate you may ask for another opinion in the hospital or perhaps go to a different hospital and select a woman oncologist.
You do want to have an abdominal surgery rather than a minimally invasive surgery. As has been suggested by other posts, a minimal invasive surgery can spread your cancer further.
Good luck and keep us posted as to your developments.
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Miha and cmb:
The doxil that I had was doxil limposomal. This is a type of doxil that is wrapped in a cocoon like substance that does not hurt the rest of the body as much as it travels through the heart but releases the doxil medicine when it gets to the cancer target.
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Miha:
4 rounds of chemo is not enough. You might not be able to tell until after 6 or possibly 12 rounds whether the treatments are really working or not. You said your CA125 was at 14. That is a good number.
I am not your doctor but you may want to ask for an EA4 test. My pet scans also showed cancer when my CA125 was very low. The CA125 does not always indicate whether you have cancer or not but the EA4 test will.
Keep fighting and Blessing to you.
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Thank you so, so very much for your thoughtful responses. Next week will be my third Doxil/Herceptin and my 6th chemo if we count the previous 3 of paclitaxel and carboplatin. Mass pressing on vena cava, very dangerous to operate w/o shrinking. I feel drained of energy and my stomach hurts almost daily, it feels like a barometer moving up and down. Had neulasta because my numbers were dangerously low and we even delayed treatment in December, and that added to my misery as I was throwing up more, even with meds.
Please elaborate more on the EA 4 test you suggested. I went to the national cancer institute database and checked the list for this test( tumor markers in common use) and I couldn't find it. It will be helpful to know a little more and be educated when I will ask the doctor.
Thank you.
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I'm curious about your CA 125, it went down to 14, what was it before you started chemo?
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Hi Frances,
my CA125 before chemo was 46.5.
last check on Nov7th was 14.
switched to Doxil on Dec2nd after 3 carbo/ packitaxol because the act scan after 3 cycles showed most retrooeritoneal and pelvic nodal metastases have increased in size.
have not checked CAa 125 since Nov 7th
thank you
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Dear Misha, I am sorry you are so sad. Did your doctors have any other recommendations? Have they mentioned cyberknife radiation? It is targeted to the lymph nodes. And are there any other immunotherapy drugs? You can ask your doctors those two questions. HUGs to you....
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Miha, has your doctor looked to see if there are any clinical trials that you can join? Forherself has a good question on cyberknife - radiation does have a role in treatment.
Hugs my dear. My heart is sad for you and I am sorry to hear this latest treatment didn't help you. I hope you can get some answers.
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Hello Dear Friends,
It is sad today. The second line of chemo did't work also. Lymph nodes continued to progress, and it spread to the pubic bone. I have constant abdominal pain and vomiting. I will meet with the doctor tomorrow. I have so much to live for and in the early 70. Does anyone ever heard of immunotherapy to cure EPSC?
I need hope
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I'm so sorry to hear the second round did not work. Did you ask about cyber knife and immunotherapy? I have not heard of immunotherapy curing so much as stopping. How long varies. They match the drug to your personal mutations. I would certainly ask about immunotherapy. And clinical trials can use new medications that are not approved yet, so that may be good for you. You have to qualify for the trial, and that means have the mutations that they are targeting, and be at the stage they are including, I hope your doctor can find something that stops this progression. Hugs to you!
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I was 3CII, lvsi UPSC had a ton of chemo and radiation, metastasized to the liver while on chemo, was on immunotherapy from 2016 for over 4 years and is still in remission.
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Miha:
I was diagnosed with serous ovarian cancer 2 years ago because the doctors didn't know exactly what kind of cancer I had due to the fact that I had a radical hysterectomy 17 years prior and didn't have my ovaries, uterus, or cervix.
After changing doctors and discussions about my past with my new doctor we discussed that I had had endometriosis in the past and during that discussion it was believed that I probably had stage 3c degenerative endometrial cancer.
I had 9 rounds of carbo and taxol. I was reacting positively to the treatment after 1 or 2 treatments so they continued with the treatments. The cancer is currently in my lymph nodes (about 5 of them) so I was put on doxorubicin for 6 more treatments. The cancer didn't react to the doxil treatment so we stopped after the 6 treatments and I have now been recently put on a MEK inhibitor called Mekinist.
My doctor reviewed my genome study on the biopsy taken from my vaginal canal 2 years earlier when I was first diagnosed. My doctor is trying to interfere with the pathways of 2 of my mutated genes, the ARAF and BRAF genes. In my case her research and the genome study led us to try this approach and get it approved by my insurance which has just recently changed over to Medicare.
This is a prescription pill however so Medicare part D covers it and not very well I might add. The pill itself cost $19,800 per month, after insurance the cost is $11,000 per month and since it is a tier 5 drug, I have to pay 25% of that or approximately $3,000 per month until I have covered the donut hole and reached the catastrophic level of coverage at which time my co-insurance would be 5% or $560.00 per month.
Thankfully, the specialty pharmacy I was working for knew of a cancer foundation in our area (Washington) that grants a few thousand dollars to cancer patients in my situation. Therefore, with that grant, my January medicine was covered.
Then I inquired about filling out the paperwork for financial assistance from the drug manufacture Novartis. Novartis will give financial assistance to patients using their drugs who earn under a certain level of income annually. The income level is lower enough that most retirees qualify for this kind of assistance. They only asked about your annual income. There assistance would cover the rest of this year if I am accepted. I am still in the process so don't know the results yet.
Check the website of the manufacturer of your drug to learn how to go about filing for their financial assistance. Usually, you fill out part A of the form and your doctor or pharmacist will complete part B and send it over for review.
I am finding there is at least 3 phases to the review process so far but everyone I have talked to and worked with along this process has been so very helpful, efficient, quick, courteous and kind. You have to politely follow-up with various people along this process to inquire if they have everything they need in order to do their review. Then help them, help you, by getting them what they need, if anything.
I recently found myself doing a 3-way phone call to connect one of these reviewers up with my pharmacist so they could speak back and forth and answer questions each of them had to resolve the roadblock. It was more efficient than finding myself in the middle and relaying questions and answers back and forth between the two parties over 2 or 3 phone calls. Thankfully, at this stage of my treatments, after 2 years, I feel well enough to do this kind of follow-through. That wasn't always the case.
Patient but courteous follow-up is helpful. The ladies who choose to do this for a living are blessed lifesavers. They are so kind and considerate, but they have VERY busy professions because there are so many cancer patients out there that need this kind of help unfortunately. However, the programs are out there available and set up to be used by us.
I also recently read that legislation has been recently passed that will cap prescription costs at approximately $7,750 maximum next year in 2024 and $2,000 maximum starting in 2025. That doesn't help us now, but help is on the way.
The main thing is to try to be your own best advocate for your life when you are able. I realize there are going to be times when you are just too sick to care or think about helping yourself. When those time are around, get plenty of rest, try to do a little exercise, whatever you can, and try to eat as healthy as possible. Let everything else go.
Then when you feel up to it, reach out to advance your cause, weather your cause is to do drug research, clinical trial research, immunotherapy research, read and understand as best you can your genome study of your genetic mutations and the drugs approved for those mutations, find a new doctor who will work with you to save your life, or look for financial assistance to help pay for your medical or prescription expenses. Keep a to-do list and prioritize it, because heaven knows you won't be able to remember all that you need to-do with your chemo brain the way it will be.
When I was first diagnosed, I heard that endometrial cancer was very rare. Now I think that there are a lot more of us than even the doctors realize. And I am personally aware of too many women in their 30's who have endometriosis right now. Could this possibly be a gateway for a percentage of those cases turning cancerous in the future. I don't know.
We wish you all the best, try to stay strong, you are not alone.
Feb11gal
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Yes, very inspiring.
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