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Harmony09's picture
Harmony09
Posts: 72
Joined: Aug 2017

Hello All! Happy Mother's Day too!

I have spent the morning with all 4 of my children and my grandbaby girl....What a wonderful blessing! I'm working on it, but I still can't shake the feeling deep in my soul that my time is limited. I found an awesome new Gyn Onc, and he finished my last 2 chemo's this past Thursday, May 3rd. I did the sandwich therapy, which is 3 Carb o/Taxol, 52 full abdominal radiation, 3 brachy therapy, then 3 more chemo. Just before the last chemo I asked for a PET/CT, knowing that the serous and clear cells in the histology can be platinum resistant. It came back NED. Unfortunately my CA125 is steadily rising. This doctor is not the wait and see type, thankfully! So....I had another PET/CT Friday (2 days ago). I just wanted to let y'all know and see if anyone has any suggestions for 2nd line treatment. I know this sounds crazy, but I hope IF there's anything to be found, it shows up now instead of having to wait until later, when it's "big enough".

Anyway, I'm not going to pretend that I am okay with all this, but I'm in a pretty good space ;) I KNOW that God is fully in charge and has me and my family in the palm of His hand.

I love this site!!! Y'all always will be my go-to for hope and inspiration. Thank you! May God bless us all on our journies.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2510
Joined: Mar 2013

Harmony, so nice to hear from you.  Glad to hear you are enjoying your day.  To all the mothers out there, and for all the memories those who have lost their mother have, Happy Mother's Day. 

Harmony09's picture
Harmony09
Posts: 72
Joined: Aug 2017

Thank you! I hope you had a a great day too ;)

Harmony09's picture
Harmony09
Posts: 72
Joined: Aug 2017

I hope others will chime in about second line or ....."salvage"? treatments....chemo resistant options and integrative or holistic approaches. I've read a BUNCH of stuff; however, I am much more interested in what is working for y'all. 

Thanks,

Stacey

CheeseQueen57's picture
CheeseQueen57
Posts: 767
Joined: Feb 2016

I had metastasis to peritoneal area 8 months after my frontline therapy. Amazingly Megace has made the cancer virtually undetectable.  

Harmony09's picture
Harmony09
Posts: 72
Joined: Aug 2017

Thank you for responding Cheese! I read your awesome news about the Megace and almost included your name in my post..."does anyone else have any possible solutions to report like Cheese" just sounded too WRONG to put out there :(

I'm so glad to hear that it's working. I hope you're still feeling better with the new stent!

derMaus's picture
derMaus
Posts: 509
Joined: Nov 2016

Don't you love the term 'salvage' ? I'm never sure whether it sounds hopeful, or like I'm a shipwreck at the bottom the ocean. I prefer the former. With regard to your second line treatment (pray it's not needed), it would be helpful to know the composition of the original tumor. Did you have geonomic tumor testing done, e.g. Foundation One? Or, does the pathology report from your original surgery have any information about whether the tumor had high microsatellite instability (MSI-H), indicating it may respond to immunotherapy? Or a notation of estrogen or progesterone receptor status, indicating it might respond to horome supressants (such as Cheese and I have). Also, if you're not already taking supplements, you might consider starting curcumin (tumeric) at the minimum. My oncologist says he has patients on up to as much as 2-4 grams/day. If you do take it, be very careful to get the kind that absorbs properly as many don't.

Harmony09's picture
Harmony09
Posts: 72
Joined: Aug 2017

Thank you derMaus! I don't remember all the results from the original tumor, and since I am no longer with the 1st oncologist, I can't get on the MyChart site to review the information. It's on my list of questions when I go to see my current doc on the 28th. I do remember that it was not estrogen or progesterone dependant, so I guess hormone therapy is out. I don't know if it was Foundation One, but, the results were very extensive...like over 20 things tested that were listed. That's on my list of questions too. Perhaps the specimen was saved somewhere? Gotta ask that too. I'm taking Tumeric and Curcumin (Only 500mg though) from an Indian gentlemen who told me to throw my old supplement out for the same reason. I'm also taking Selenium, Ashwaganda Root, Echinacea, Aloe Vera, Ginger Root, and Flax Seed Oil; all because they are supposed to be beneficial for my immune system. So far they're helping. Even with the Neulasta, my WBC was dropping with each chemo to a 0.9 twice, but taking these has helped it to inch up a little bit over 2.0 for the last two. I'm done, but will keep taking them. My doctor gave me a book called Life Over Cancer by Keith Block M.D., and a friend gave me another called Fat For Fuel (The MMT Diet). Both outline similar diets geared towards preventing a hospitable environment for recurrence...low animal and trans fats, mostly plant based, low carbs and sugar, lots of colorful veggies and berries etc. I'm almost to the part about supplements, and I am going to meet with a Naturopath in a few weeks. I'm not sure how many times I can go, since I'm not sure if my insurance is going to cover it. I'm just so grateful this doctor is supportive of a multi-faceted approach, whereas the previous was totally opposed. There's so much information on supplements and deficiencies that I get overwhelmed and sceptical. That's why I trust y'all more! I'm also going to ask about Metformin. I've read about the clinical trials and seen the posts on here. Since I had gestational diabetes twice, even though it went away, my dad is diabetic and my daughter is insulin resistant...so with my genetics, it couldn't hurt.

As you can see, my mind is all aswim with ideas. I'm REALLY working on patience but not praying for it ;) I do have moments of peace and times when cancer isn't at the forefront of my mind...but they are just moments right now. I know I will feel better when I get to see my doctor and we have a plan. I just want to have all my questions together. Anything else you can think of will be greatly appreciated!

I'm so glad you took the time to respond AND that you have something that's working for you too!

Donna Faye's picture
Donna Faye
Posts: 190
Joined: Jan 2017

Dear Harmony, take one day at a time. 21 years ago I had stage 3 BC and 21 involved lymph nodes in my left arm. Doc said 2 years and surely there would be metastisis.  Guess what! It didn't. Then in Jan. 2017, UPSC ! Stage 1A - chemo and brachy; Feb. 2018 - 2 tiny lesions on vaginal wall! Oh No! 25  external rads and 4 brachy. Now 4 weeks out of treatment - feeling good and all OK for now.Exercise and eating well help. Laughter is essential! Hugs are welcome!

So, I just wake up everyday and count my blessings - 6 grandchildren that were only twinkles in my son and daughter's eyes; 3 wonderful in laws and tons of new friends . What der Maus says is true...all kinds of treatments keep us moving on up...so do not worry about tomorrow! Enjoy today as you did yesterday. Find doctors you trust and be as well as you can be.  We warrior women do carry on. Glad you have joined our band.

Harmony09's picture
Harmony09
Posts: 72
Joined: Aug 2017

Hi Donna! Thank you so much for sharing your journey! I'm think I mentioned somewhere else that I'm in Recovery, so I am always looking to better live a day at a time ;) Recently, it's more like...I'm constantly reminded that I can be doing much better. Yesterday I spent the day at the beach with all 4 of my children, the grandbaby, and a stepdaughter and her 3 children. It was amazing! I think I stayed out of my head MOST of the time:) I'm so glad to be a part of the Warrior Women Band! I can honestly say that I am grateful for some of the things that cancer has given me. If I can just find peace with the unknowns, I will fare much better. I'm so much better than I was this time last year, so I have hope.. And....I have y'all! I'm so inspired by your story and reminding me to enjoy the moment I'm in. The book I'm reading by Keith Block M.D. devotes 3 chapters to the mind-body connection. Maybe I should read those first!

Thank you so very much, and may you have many more years with NED :)

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