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Mother has Carcinosarcoma (Stage 4), poor kidneys, Nephrostomy Tubes, ileostomy... help! Looking into alternative options.

hvargas
Posts: 1
Joined: May 2012

Hi everyone,

I just want to start by saying that I've sifted through these forums for the last few hours and I'm amazed at how strong you women are! I think we can beat this thing we call "cancer", we just have to keep our heads held high and stay strong!

Now for a bit of background information: My mother, Marta, is 58 and was diagnosed with advanced Uterine Cancer (MMMT) in Summer of 2011. At the end of September 2011, she had a total hysterectomy as well as had a polyp removed from her colon (they found it just before the surgery and feared it may be malignant). The procedure went well however, a week later, the stitching from the polyp removal broke open and there was leakage inside. She had a second emergency surgery in which they had to give her an ileostomy. The site of the leakage was infected and things spiraled downwards.

To keep it brief, she was practically bedridden and immobilized for a month. As well, her kidney's function plummeted and they haven't recovered since (we recently found out from a renogram that they are performing around 30%). This led to many delays including her planned chemotherapy being drastically delayed. They did a few radiation sessions in December (after my sister suggested it to my mother's doctor...) while they waited for my mother's creatinine levels in her kidneys to stabilize. At the end of January, 2012, the creatinine levels slightly stabilized and they gave my mother a treatment of Carboplatin + Taxol. A few days later, my mother fell very weak and she ended up getting a blood infection (MRSA had entered her blood). She was hospitalized for a month to fight the bug and treatment was stopped.

My mother's Oncologist after that was not too fond of chemotherapy for her as she saw that she fell ill immediately after treatment. She left the choice up to my mother to continue and after some thought, she decided to try again. This time however, they treated her with just the Taxol, and at a lower dosage. The Oncologist decided against Carboplatin because they are heavily reliant on the kidneys properly filtering it out and my mother's kidneys were not cooperating too well. Additionally, she received treatment every week rather than once every 3 weeks. She began again around March 19. Of the next 6 weeks or so, my mother received 3 of her treatments. The doctor decided against it some weeks when she saw her creatinine levels spike.

Finally, on the 24th of April, her creatinine jumped to a new high (approx 450... a healthy human should be around 70). Her Oncologist decided to stop chemotherapy and admitted my mother to Princess Margaret Hospital to try and figure out what was going on in the kidneys (about 7 months and still no concrete answer). She is still there now and yesterday we had a difficult meeting with the doctor: she said that it was not safe to continue chemotherapy, informed us that my mother's tumour had grown from approximately 3cm in February to 15cm in April (the chemotherapy did nothing even though it was barely administered), and it was time to think about whether she wanted to go home or into pallative care. It was very difficult... but then again the last 7-8 months having been nothing challenges.

My mother is very strong. She is not in any pain at the moment, thankfully.. she's been through hell and back and I've only listed the "major milestones" in this journey. We are a very strong family but it's been such an emotional roller coaster.

For those of you who read all of that, thank you. Now my questions.

What can be done at this point? I've been looking into alternative treatments and supplements and I wish to get my mother onto Essiac Tea. Does anyone know if it is ok to take with an ileostomy (the caution label advises against it if you have gastro-intestinal problems)? I also purchased Spirulina tablets which I want my mother to start on...

I may do some research on Sodium Bicarbonate through IV. Does anyone share any experience or knowledge on this?

I've tried to get my mother to drink alkaline water (adding pH drops into her water makes her a bit anxious but I believe she's loosening up a bit now). Her appetite has changed in the last 2 months especially. I've tried turmeric but she wasn't a fan of it. She has managed to cut out quite a bit of sugar from her diet but I would like her to cut more out. I made her fruit/vegetable smoothies when she was home but in the hospital it takes a bit more to convince her to drink it.

What else can ANYONE recommend to help out considering my mother's scenario: poor kidneys, ileostomy (this leaves all high-fibre foods out of the question), nephrostomy tubes (tubes that go through her kidneys to her bladder to make a clear passage for urine which would ideally lower the creatinine) and aggressive cancer.

THANK YOU truly for reading. I'm scared and can only imagine how my mother has felt through this whole ordeal.

God bless every single one of you.

Hector

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Hector,

Sorry to hear about not only your young mom fighting a very aggressive cancer at stage 4, but other health issues with kidney and ileostomy.

I can only comment on our aggressive cancer MMMT. I've been handed this same type cancer with a stage 3C...having moved to my 1 pelvic lymph node -- did have successful chemo and pelvic radiation, completed all July '09. Luckily I have no other health issues, so I'm able to change my diet and continue to exercise. Unfortunately, with your mom she has other health issues and I cannot comment on suggestions at this point. What I can tell you this cancer is very, very aggressive, so when my doc treated me, he was very aggressive with my chemo and radiation.

Since your mom is limited on what type of foods she eats due to her kidneys and ileostomy, might I suggest a specialized doctor --- CANCER AND INTEGRATIVE MEDICINE SPECIALIST. They work with complementary and alternative therapies including mind-body treatments, botanical therapies, medical use of marijuana and traditional Chinese medicine herbal therapies.

Have you consulted any of your present docs for recommendations to continue a good quality of life? When in doubt, first off ask your present team of docs and if they are no help, consider a doc who's specialized such as one mentioned above.

I wish I could be more helpful, but know there is hope and help for your mom. She's one lucky lady to have a wonderful child to be by her side thru thick and thin.

Possibly someone else here can chime in, as know there's always hope....never ever give up.

Cancer is not a sentence it's a word!!

Jan

RoseyR
Posts: 464
Joined: Feb 2011

My heart goes out to you as you attempt to help your mom.

I agree with Jan that finding a good integrative doctor would be a first good step--and if you live in a city of any substantial size, that should't be too difficult. (Just Google "integrative doctors" and if you can't find any, try "naturopaths"; just be sure that they are credentialed; I would call before an office visit to be sure they have a lot of experience with cancer patients.)

If this were my mom, I'd also do the following (I too was diagnosed with MMMT uterine cancer a year and a half ago--but without your mother's complications):

Yes, get her to cut back on sugar.
I wouldn't worry about alkaline water; just avoid tap water; if it's bottled, try to get Fiji or Trader Joe's or Whole Foods' own bottled water.

I'd try to get her to eat oatmeal with berries most mornings if she has any appetite. (Both oats and berries have anti-cancer properties.)

I'd try to make her a Whey Protein smoothie once or even twice a day. Add a banana and/or a few berries for better flavor. You can use water as the base; add one scoop of powder and put it in the blender for half a minute. Good brands are Designer Whey, Whey Cool, Dr. Mercola's Whey Powder (vanilla, chocolate, banana). Whey is a precursor of glutathione, which most cancer patients are deficient in. Also a great source of protein and amino acids. It seems to enhance general wellbeing.

If she hates turmeric, start her on curcumin capsules. Be sure she takes them with a meal, three times a day. I'd be sure she's getting at least 1500 mgs--500 x 3--or more, as studies show it's safe up to at least 8,000 milligrams (8 grams) a day. Good brands are Life Extension's SuperCurcumin and Pure's curcumin. If you take LE's brand, she'll need only two to three capsules a day. IF it's Pure, she'll need 3-6 a day.

I would have her level of Vitamin D tested via blood test. It should be 50-70, ideally. If lower (and it almost certainly IS lower), give her four to five drops of Liqui-D on a teaspoon each day--until her levels come up.

I'd give her fish oil, two to three teaspoons a day. (Brand with NO bad flavor is "Finest Pure Fish Oil" by Pharmax, flavored with orange oil. Take the D and fish oil right after meals, along with the curcumin; oil enhances the absorption of curcumin.

Speaking of oil, olive oil is great for her, as are the following:

Green tea (let steep at least 3-5 minutes); try to drink 3 cups or more a day.
Berries
Brown rice or quinoa--with black beans or legumes of any kind such as chick peas
cabbage, brussel sprouts, or broccoli (perhaps in stir fries to enhance flavor?)
dark green vegetables of any kind
sauerkraut (any kind of fermented food)
if meat, be sure it's organic; the same with cheese (I'd minimize cheese or milk products)

The best book on diet and cancer is called Anti-Cancer by eminent physician; try to get it via Amazon.

There is also interesting research on Chaga, a mushroom from Siberian regions, that shows at least anecdotal success in treating uterine cancers; if you get the tea or emulsion, try to buy it from North American Herbs, Inc. (For that matter, ANY kind of mushroom product can help boost her immune system, such as Maitake-D fraction, available at health food stores, or AHCC, much more expensive, a shitake extract. Given her advanced stage of cancer, I might try Chaga and am soon to order some myself; have just started researching it. In his book The Cancer Ward, Solzhinitshyn (sp?) claims that he cured his own cancer with Chaga.

I realize all this must seem overwhelming, but if you make even three major changes, get even three of these supplements, that's a major start.

I'd try, overall, to make her protein sources primarily whey protein smoothies and beans/rice rather than too much meat and dairy; a little of the latter is fine if organic.

Finally: Since her gastrointestinal system is so disturbed, if there is one supplement I'd try to get her to start the day with, it's ProGreens: one scoop mixed well in a glass of water. The taste isn't good; nor is it bad; but it is full of spirulina, chlorella, and millions of probiotics that can only enhance her digestion and absorption of nutrients.

All these products are available online.

Best,
Rosey

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