MMMT survivors

Susanna23
Susanna23 Member Posts: 66 Member
in Uterine/Endometrial Cancer #1
Dear June, Jan and the other ladies who have posted about MMMT (uterine carcinosarcoma)
I had my third check up today and all was fine. A physical exam - outside and inside - of the pelvis. Asked about Ca125 but it is not thought to be useful (I had it tested during chemo and it was never more than 16). Next check up is April 17 with annual chest X ray. Oncologist thought recurrence to lungs most likely but surgeon who has done last two checkups does not think it needed but nevertheless ordered it for me.
I am also seeing a complementary care doctor and am on homeopathy and Iscador - waiting for autogenic training and Reiki referrals (had latter during chemo).
Also doing juicing, green tea, turmeric etc
Thank you all for your support - have picked up lots of useful info from this Board and passed it on!
Btw, I was stage Ia, surgery w lymph node dissection Nov 10 2010 then six rounds carbo/taxol. Surgeon who did the op saw me today. I have hair - but it is part-time as I dislike the curls!
Take care
Susan

Comments

  • nempark
    nempark Member Posts: 681
    #2
    Susan- So good to hear from you!
    Hi Susan: It is a pleasure to hear from you. I am so happy for you that you are doing so well. Thank God, I am still in the clear, but unfortunately, still have roving pains and back pains. Most of all, my sweet daughter was dx with Leukemia in November of 2011. I now know what it feels like to be heartbroken. Lots of Docs visits and lots of emotional ups and downs. I pray that she goes into remission soon. Because we are Jehovah's Witnesses we abstain from blood transfusions so since this is blood borne it is more of a challenge. I will keep the board informed. I have confidence that she will get through this. Medicine these days are amazing. Please keep in touch and thanks for writing. Love and best wishes for continued health. June
  • HellieC
    HellieC Member Posts: 524 Member
    #3
    Congratulations, Susan
    So pleased your most recent check up was good. Long may it continue that way. Hope the hair decides to "de-curl" itself soon. Mine is now back quite thick and strong (finished chemo Jan 2011), most of the curl has gone - just a slight wave now, which I quite like.
    Kindest wishes
    Helen
  • RoseyR
    RoseyR Member Posts: 471 Member
    #4
    nempark said:

    Susan- So good to hear from you!
    Hi Susan: It is a pleasure to hear from you. I am so happy for you that you are doing so well. Thank God, I am still in the clear, but unfortunately, still have roving pains and back pains. Most of all, my sweet daughter was dx with Leukemia in November of 2011. I now know what it feels like to be heartbroken. Lots of Docs visits and lots of emotional ups and downs. I pray that she goes into remission soon. Because we are Jehovah's Witnesses we abstain from blood transfusions so since this is blood borne it is more of a challenge. I will keep the board informed. I have confidence that she will get through this. Medicine these days are amazing. Please keep in touch and thanks for writing. Love and best wishes for continued health. June

    So Sorry about your Daughter!

    Dear June,

    How old is your daughter? I am so very sorry to hear she's fighting leukemia. Have you investigated LDN's possible efficacy for her kind of leukemia?

    I suggest you go to the web site Low-Dose Naltexrone, which is inexpensive and has no harmful side effects. You can also buy a book called The Promise of Low Dose Naltrexone via Amazon.com

    In the meantime, congratulations on your own remission. (I forget when you were diagnosed and at what stage, but it's great to know you are doing well. Assume your roving back pains are from pelvic radiation?)

    I am a year and a half from diagnosis (stage 1B, no lymph node detection) and feeling really good. Have second checkup in February after finishing sandwich treatment in early August.

    Love,
    Rosey
  • RoseyR
    RoseyR Member Posts: 471 Member
    #5
    Congratulations and a few Questions

    Susan,

    Glad to know you're doing so well and assume you had just chemo, not radiation.

    As I too am seeing an integrative doctor am curious about your Iscuador and homeopathy.

    He too recommended Iscuador and when I hesistated, he said, "if you don't take Iscuador, I'd recommend AHCC (a proprietary mushroom blend used widely in Japan for cancer patients, esp while in chemo; studies show that it boosts the immune system.)
    Am also taking ProGreens each morning, two tsps of fish oil a day, Vitamin D3 drops and a multivitamin without copper or iron; these are what he prescribed for my daily regimen, and so far I am feeling great.

    Here are my questions about Iscuador (mistletoe):

    How expensive is it? (I pay about two hundred a month for AHCC.
    How often do you administer a shot to yourself?
    How long have you been taking it--and di you had any allergic reactions?
    Did you note any measurable results through blood tests--or even subjective feelings of wellbeing since taking it?


    Just one question about Homeopathic remedies:
    Unless you are taking more than two, can you share what they are?

    Finally:
    Can you tell me anything about your integrative doctor's background, training?


    Thanks so much,
    Rosey
  • Susanna23
    Susanna23 Member Posts: 66 Member
    #6
    RoseyR said:

    Congratulations and a few Questions

    Susan,

    Glad to know you're doing so well and assume you had just chemo, not radiation.

    As I too am seeing an integrative doctor am curious about your Iscuador and homeopathy.

    He too recommended Iscuador and when I hesistated, he said, "if you don't take Iscuador, I'd recommend AHCC (a proprietary mushroom blend used widely in Japan for cancer patients, esp while in chemo; studies show that it boosts the immune system.)
    Am also taking ProGreens each morning, two tsps of fish oil a day, Vitamin D3 drops and a multivitamin without copper or iron; these are what he prescribed for my daily regimen, and so far I am feeling great.

    Here are my questions about Iscuador (mistletoe):

    How expensive is it? (I pay about two hundred a month for AHCC.
    How often do you administer a shot to yourself?
    How long have you been taking it--and di you had any allergic reactions?
    Did you note any measurable results through blood tests--or even subjective feelings of wellbeing since taking it?


    Just one question about Homeopathic remedies:
    Unless you are taking more than two, can you share what they are?

    Finally:
    Can you tell me anything about your integrative doctor's background, training?


    Thanks so much,
    Rosey

    Answers to Rosey's questions
    Hi Rosey and everyone else
    Happy to answer these questions. Yes, I only had chemo - carboplatin and taxol. Oncologist said risk of systemic (esp to lungs) was higher than of local recurrence so chemo alone more appropriate.
    I don't pay anything for the Iscador treatment because it's on the NHS and I am 61 (we don't pay for meds from age 60). If I were under 60, it'd be the standard charge which I think is £7.40 for a month's supply. I take it by mouth (8 drops in the morning, 12 in the evening, in a bit of water - Monday to Friday only). I'm told there's no difference between taking it orally or by injection - the former is the norm in the UK, the latter in Germany.
    I've been taking it since November and will be on it for up to 10 years! Noticed no side effects so far. We are not doing any blood tests but on my notes it's said to be 'immunomodulatory'. Been feeling good since taking it....
    My homeopathic remedies are Kali Arsenicosum and Calcerea Carbonica
    And my integrative doctor is Dr Sosie Kassab - all I know is that she is medically qualified which was important to me.
    I too take vitamin D and my GP has ordered a test to see if it's come up since I started it - haven't done the test yet. A few other bits, which I might have mentioned before - half a teaspoon of Matcha in final inch of green tea in the morning (it's a kind of concentrated green tea powder), turmeric in pickle form (like slices of ginger), cucumber/celery/orange/ginger type juice combo most days. Flax seed oil most days. Only coconut oil for cooking (abandoned the olive oil for heating - after chat to flax seed oil farmer who supplies us! you can't cook with flax seed oil)
    Note for Helen - thanks so much for your kind wishes - I thought of you today because I know you're on apricot kernels. I saw apricot kernel seed butter in Revital today! I will go back and buy some I think but already got a jar of almond butter to finish up.
    Thanks to June as well - I had some roving back/tummy pains a while back which were worrying - seemed to clear up after a couple of weeks on the homeopathy/iscador and OK at the moment though sometimes feel a bit achey after working out or walking a lot. I am so sorry to hear about your daughter and hope you can find a good treatment plan.
    Take care
    Susan
  • RoseyR
    RoseyR Member Posts: 471 Member
    #7
    Susanna23 said:

    Answers to Rosey's questions
    Hi Rosey and everyone else
    Happy to answer these questions. Yes, I only had chemo - carboplatin and taxol. Oncologist said risk of systemic (esp to lungs) was higher than of local recurrence so chemo alone more appropriate.
    I don't pay anything for the Iscador treatment because it's on the NHS and I am 61 (we don't pay for meds from age 60). If I were under 60, it'd be the standard charge which I think is £7.40 for a month's supply. I take it by mouth (8 drops in the morning, 12 in the evening, in a bit of water - Monday to Friday only). I'm told there's no difference between taking it orally or by injection - the former is the norm in the UK, the latter in Germany.
    I've been taking it since November and will be on it for up to 10 years! Noticed no side effects so far. We are not doing any blood tests but on my notes it's said to be 'immunomodulatory'. Been feeling good since taking it....
    My homeopathic remedies are Kali Arsenicosum and Calcerea Carbonica
    And my integrative doctor is Dr Sosie Kassab - all I know is that she is medically qualified which was important to me.
    I too take vitamin D and my GP has ordered a test to see if it's come up since I started it - haven't done the test yet. A few other bits, which I might have mentioned before - half a teaspoon of Matcha in final inch of green tea in the morning (it's a kind of concentrated green tea powder), turmeric in pickle form (like slices of ginger), cucumber/celery/orange/ginger type juice combo most days. Flax seed oil most days. Only coconut oil for cooking (abandoned the olive oil for heating - after chat to flax seed oil farmer who supplies us! you can't cook with flax seed oil)
    Note for Helen - thanks so much for your kind wishes - I thought of you today because I know you're on apricot kernels. I saw apricot kernel seed butter in Revital today! I will go back and buy some I think but already got a jar of almond butter to finish up.
    Thanks to June as well - I had some roving back/tummy pains a while back which were worrying - seemed to clear up after a couple of weeks on the homeopathy/iscador and OK at the moment though sometimes feel a bit achey after working out or walking a lot. I am so sorry to hear about your daughter and hope you can find a good treatment plan.
    Take care
    Susan

    Your Juice Combo

    Thanks, Susan.

    Just curious: was even your juice combo recommended by your doctor--or did you cobble it together via your own research?
    And how MUCH flaxseed oil a day?

    Thanks,
    Rosey
  • jazzy1
    jazzy1 Member Posts: 1,379
    #8
    My status!
    Congrats Susan! That's so good to hear and knowing we've got the same aggressive cancer, MMMT.

    I as well had my 6-month follow up today and made it out still with NED. I completed treatments (chemo-taxol/carbo and 33 external pelvic radiation, after complete hysterectomy stage 3C) July '09. Doc follows the CA125 marker as it was well over 500 pre treatments and after each and every treatment came down until the end and today stays around 4 to 5. He follows any symptoms I might have and then off for scans. One thing I've learned, not everyone can follow this marker, even gals with ovarian.

    I've changed my diet to all vegies, fruits, no meat or dairy, increased my weight bearing exercises for bone density (which has gotten back to Normal range as prior had thinning in upper hip), exercise 1 hr 6 days/week -- walking, elliptical equip, practice yoga and mind alternative type de-stressers, changed all my personal cosmetics and hygiene products to non-toxic ones and basically learned to live a different life style.

    Do take certain supplements and one of the most important-- added vitamin D and have it monitored every 6-months by a nutritionist. Per Dr. Oz, this is one of the most important vitamins to fight cancer!

    In the end, I've learned to enjoy each and every moment of the day, knowing it could be my last.

    Continued good health to everyone~~
    Jan
  • RoseyR
    RoseyR Member Posts: 471 Member
    #9
    jazzy1 said:

    My status!
    Congrats Susan! That's so good to hear and knowing we've got the same aggressive cancer, MMMT.

    I as well had my 6-month follow up today and made it out still with NED. I completed treatments (chemo-taxol/carbo and 33 external pelvic radiation, after complete hysterectomy stage 3C) July '09. Doc follows the CA125 marker as it was well over 500 pre treatments and after each and every treatment came down until the end and today stays around 4 to 5. He follows any symptoms I might have and then off for scans. One thing I've learned, not everyone can follow this marker, even gals with ovarian.

    I've changed my diet to all vegies, fruits, no meat or dairy, increased my weight bearing exercises for bone density (which has gotten back to Normal range as prior had thinning in upper hip), exercise 1 hr 6 days/week -- walking, elliptical equip, practice yoga and mind alternative type de-stressers, changed all my personal cosmetics and hygiene products to non-toxic ones and basically learned to live a different life style.

    Do take certain supplements and one of the most important-- added vitamin D and have it monitored every 6-months by a nutritionist. Per Dr. Oz, this is one of the most important vitamins to fight cancer!

    In the end, I've learned to enjoy each and every moment of the day, knowing it could be my last.

    Continued good health to everyone~~
    Jan

    CONGRATULATIONS, JAN!


    You've clearly taken good care of yourself; it's so great you're still NED and may well be so for years to come.

    You say you've changed to all fruits and vegetables--so where does your protein come from--just whey shakes? Or do you do you eat beans and grains?

    Lastly: I too have changed my cosemtic lines and use no perfume anymore or body cremes. Do you use foundation or lipstick? I've found Gabriel foundation nontoxic and lipstick from Arbonne to be much better than others but wonder what you have found. I wear no eye makeup but hate to give up my foundation and lipstick; try to keep them subtle.

    Was also looking for some skin "tonics" to liven up my skin after all that chemo. Am currently using Kiehl's products (ingredients seem really fine, non chemical) but can't say I see fabulous effects; am just looking for a little glow. (Everyone says I look great after all that treatment, but are we ever satifisfied?)

    Thanks,
    Rosey
  • jazzy1
    jazzy1 Member Posts: 1,379
    #10
    RoseyR said:

    CONGRATULATIONS, JAN!


    You've clearly taken good care of yourself; it's so great you're still NED and may well be so for years to come.

    You say you've changed to all fruits and vegetables--so where does your protein come from--just whey shakes? Or do you do you eat beans and grains?

    Lastly: I too have changed my cosemtic lines and use no perfume anymore or body cremes. Do you use foundation or lipstick? I've found Gabriel foundation nontoxic and lipstick from Arbonne to be much better than others but wonder what you have found. I wear no eye makeup but hate to give up my foundation and lipstick; try to keep them subtle.

    Was also looking for some skin "tonics" to liven up my skin after all that chemo. Am currently using Kiehl's products (ingredients seem really fine, non chemical) but can't say I see fabulous effects; am just looking for a little glow. (Everyone says I look great after all that treatment, but are we ever satifisfied?)

    Thanks,
    Rosey

    Rosey
    All I can do is try to keep my immune system up and running full tilt...but never know when the other shoe will fall.

    According to my height/weight, nutritionist suggests I get 50 grams protein a day. Between my protein shakes with soy milk, chia seeds, flax seeds twice per day it's 19 grams. Add in almonds, fish (salmon), beans, steel oats, quinoa to name a few, I've got the 50 grams.

    As mentioned it took me a long time to find some good non-toxic cosmetics and facial products. I found the www.ewg.org website as a guide, to be very informative! Go to their site and under section titled 'SKIN DEEP' search for the name of your product such as Gabriel...see if it brings up a rating. If not, you can actually go to a section and list all the ingredients on back of your container of foundation...it will spit out a rating. Few companies I've found with a 0-1 rating -- Rejuva (eye shadow) Evan Healy (facial cleanser and tonic), Giovanni (hair conditioner) RMS Beauty (liquid foundation). Many have foundations which are powder and make my face look scaly and un-colored. RMS Beauty is the latest foundation I'm using which is cream and works great!!! None of them are cheap, but well worth it as not loaded with toxins. The only one I found at a local retail store (Whole Foods) was Evan Healy, in fact, started with a sample kit size. Send me an email if need additional information, don't want to bore you.

    Glad to see you're searching for better products. Remember what we put on the outside of our skin, can also affect what's happening inside our bodies.

    Hugs,
    Jan
  • Susanna23
    Susanna23 Member Posts: 66 Member
    #11
    RoseyR said:

    Your Juice Combo

    Thanks, Susan.

    Just curious: was even your juice combo recommended by your doctor--or did you cobble it together via your own research?
    And how MUCH flaxseed oil a day?

    Thanks,
    Rosey

    juice combo
    Sorry for late reply Rosey. My complementary doctor nodded her approval when I told her I was juicing, that's all! I make up my own recipes from research - there seems to be a general consensus on the value of cucumber, celery, ginger so most days I do have those as main ingredients. Then carrot, orange, apple, broccoli stalk, lemon/lime....blueberries.
    Flaxseed oil - about 15 mL - a tablespoon -most days.
    Starting autogenic training this Tuesday at the complementary centre - will report back!I've had a long wait for this - was supposed to follow on from chemo - but better late than never!
    Take care
    Susan
  • Susanna23
    Susanna23 Member Posts: 66 Member
    #12
    jazzy1 said:

    My status!
    Congrats Susan! That's so good to hear and knowing we've got the same aggressive cancer, MMMT.

    I as well had my 6-month follow up today and made it out still with NED. I completed treatments (chemo-taxol/carbo and 33 external pelvic radiation, after complete hysterectomy stage 3C) July '09. Doc follows the CA125 marker as it was well over 500 pre treatments and after each and every treatment came down until the end and today stays around 4 to 5. He follows any symptoms I might have and then off for scans. One thing I've learned, not everyone can follow this marker, even gals with ovarian.

    I've changed my diet to all vegies, fruits, no meat or dairy, increased my weight bearing exercises for bone density (which has gotten back to Normal range as prior had thinning in upper hip), exercise 1 hr 6 days/week -- walking, elliptical equip, practice yoga and mind alternative type de-stressers, changed all my personal cosmetics and hygiene products to non-toxic ones and basically learned to live a different life style.

    Do take certain supplements and one of the most important-- added vitamin D and have it monitored every 6-months by a nutritionist. Per Dr. Oz, this is one of the most important vitamins to fight cancer!

    In the end, I've learned to enjoy each and every moment of the day, knowing it could be my last.

    Continued good health to everyone~~
    Jan

    well done
    Belated congratulations, Jan - so good to know you are still NED.
    I'm working on my cosmetics/toiletries too - having a little shopping trip to Neal's Yard Remedies tomorrow!
    Re vitamin D, I have a test ordered - will probably go next month to see if my supplements have increased my levels or whether I need more.
    Take care
    Susan

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