Any advice for the newly diagnosed ovarian carcinosarcoma (stage 3C MMT)? Vitamins? Nutrition? Ostomy bags? Exercise?

My mother has recently been diagnosed stage IIIc MMT ovarian cancer. She had already previously had a hysterectomy so this won't be part of the treatment. They have surgically removed the tumors, which crushed her colon and now has a colostomy bag which has been a nightmare to sort out. Chemo starts next week and right now she has virus that's making it very difficult to eat. She's lost 50lbs in the last 4 months. She has had it tough for the last couple of months, getting hit with one blow after another. Advice? Suggestions? Anything that particularly made you feel better when nothing else would?

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  • I am sorry to hear about your mother. She has had it rough lately. It might be worth looking at Macmillan website and ringing their helpline or finding a Macmillan nurse if you're in the UK. You can try the Ovacome helpline too. I found the book called everything you need to know to help beat cancer by Chris woollams very helpful for above on nutrition and vitamins generally but not specifically to your mothers situation.

    I do hope she feels well enough to start treatment and can build up again

    Love Francesca x

  • Sorry - I don't know what 'MMT' means, but I had the same diagnosis 5 years ago. After surgery, I had 6 courses of carboplatin, and I went onto the Budwig protocol for 6 months. Since then I have followed the advice in Servan-Schreiber's 'Anticancer; a new way of life', and have been in remission since.

    I'm someone who is suspiscious of medical 'knowledge', having worked with the health service for 40 years, and I felt a strong need to gain control of my life, my disease and my fate and recognise that doctors have very few answers to cancers. I have been lucky in that these have worked for me against all the odds (and they were very poor). Everyone has to find their own way, but I've mentioned 2 of the places I found most useful in my hunt for health.

    Very best wishes - I hope you and she finds the way!

    Isadora.

  • I do not know how old your mother is and wherher she had an illeostomy or a colostomy but I am 73 I was diagnosed with stage 3c adenocarcina in Sept 2009 had surgery in Jan 2010 and after 2 lots of chemo a second surgical intervention in Dec 2011. That resulted in a colostomy at the rectal end of the colon. Once it had settled (by the summer of 2012) i learned to irrigate (basically a DIY enema) and , while it requires an hour each mornimg I no longer have problems with leakage or needing to change my bag while out. I do not use the drainable bags but salts sealed bags and the smaller Pelican mini poches which are the size of a large elasoplast. I also use the cheapest unscented and moisturiser free baby wipes (Tesco's own are the chapest I have found so far) and incontinence pants help to deal with the mucous produced by the rectum. As a result I am much more confident and in control. I am currently in my 3rd recurrence, weekly taxol did not work and I am about to start caelyx.

    If you want more info about my experience please feel free to message me! When the nausea is very bad I keep up my calorie intake with fresh pineapple, small cubes of mild cheese like Edam, Gouda, & Jarlsberg; & midget gems. And I also keep small bowls to hand to nibble on throughout the day.

    I hope this helps.

    Margaret!

  • I am sorry to hear about your Mum welcome to our support site.

    You have had good advice already and I can't add to this.

    You are obviously a caring daughter (or son) my only advice would be to let your mum lead in what she needs or wants... sometimes well meaning carers can be a bit overpowering in their urgency to get their loved ones well (although this is understandable) first and foremost it is what your mum wants regarding diet,exercise etc (try not to run before she can walk) there are also other ways of supporting her ... like being there and listening...I thought this link might help as it is about the same type of cancer.... gynommmt.wordpress.com/summ...

    Best wishes love x G x

  • Gwyn,

    Thanks for that link - as someone who had it, I've not heard of the MMMT stuff!

    I'm interested in all the disagreement that the site identifies.

    Hope you are well.

    Isadora

  • Thank you Isadora,

    Perhaps I should have mentioned that the link is not a link to a professional body but a link to people that have (or like you say have had) triple MT or Carsinosarcoma ... There is the disagreement that a site like the one on this link entails... (because of personal experiences) as you know we are all different and we each deal with our own situation the way we feel fit...whether it be following the medical professionals or not...it is good though to find out about other peoples experiences and how they themselves have dealt with it, especially when the cancer is rare and you don't come across it very often.... I have no experience of Carcinosarcoma and can't pretend to know anything about it....

    What I do know though is that you have a lot to offer having had the same type of disease and the length of time you have had it without a recurrence.

    Best wishes love x G x

  • Hello. So sorry to read about your Mum - life throws us some hard stuff to deal with. As is don't know what MMT ovarian cancer is, I am afraid to comment or make suggestions. But Gwen put it beautifully - find out what your Mum wants - probably love, reassurance, the promise that she won't be in pain & most importantly that you are supportive of any decision she makes. If she will allow you, talk to her doctor /consultant/ oncologist and see what is planned. Sending best wishes to you ad your Mum. Daisies

  • I am reposting a responce to the question of beetroot being beneficial while under chemo treatment.

    I am thinking that in this responce I gave some resons and motivation for juicing that you may find it usefull.

    "Hi Wendy,

    Great that you are drinking beetroot juice, I got this advice too, and a bit more. I was told that the leaves from beetroot are even more valuble. Usualy I trew them out, not anymore. So one naturopath(ND) has advised that beetroot root contains 1 substance that helps the liver regeneration while the leaves have 4 substances. Since then I juice them both at the same time. Doesn't have to be much juice but about 1/2 cup or more with the meal. Also I was told that there are enzymes in the betroot that aids digestion, especialy of the protein which are so important for the DNA repair together with minerals and iodine. Also since you are in Chemo treatment you need protein + good fat for gut linning regeneration. All cell walls are 50% protein and 50% fat.

    Another naturopath had prescribe Betaine Hydrochloride which is to increase gastric juice again saying that protein digestion depends on good gastric juice. Now this Betaine Hydrochloride is a betroot extract, of course much more concentrated then the juice.

    Proffessor Keith Scoth-Mumby an MD and ND mentioned that there are some conditions of the body in which the cancer develops:

    1) oxigen deficiency

    2) antioxidant deficiency

    3) electron deficiency

    4) enzyme deficiency

    5) love deficiency

    6) vitamine C & D deficiency

    I think the beetroot is helping in a number of points mentioned above.

    Some thoughts on vit A and D, they are invoved in corect copy of DNA and the speed of cell division and multiplication. Essential in the fight for health recovery. The best source is organic food, hence the juicing. Vit D I ended up taking supplement drops.

    Having chemo targets the bad cells while having the good enriched diet helps the majority of good cells cope with the chemo.

    It brought me to conclude that betroot juice with the leaves together is a great thing to consume, the only side efect is good health. Keep juicing! Hope you gave a good juicer that presses, not spins fast.

    PS. Other juices the ND recomended are:

    1) carot, celery and green apples.

    2) broth for minerals and protein, made of vegetables(carrots, parsnip, parsley root, potato, pumpkin, onion, garlic, greens, etc.) with celtic salt boiled for 4 hours strained and served warm with a bit of organic caynne, olive oil and miso. Served at evenings as last meal."

  • Most important is that your mum is feeling that she has you as a support that makes good decisions for her. The shock of the diagnosis and the trauma of operation and the changes in her body makes her feel overwelmed, the amigdala in the brain is firing and chemicals are produced in the brain that slows her powers to think. The chemo does that too. Assurance from a suportive daughter/son is most important and valuble. A plan for recovery help both of you to settle down emotionaly and the sooner you two get over the shock and panic the quicker her recovery starts. Clouds have shiny silver linning!

  • My Mum also had a colostomy bag due to Ovarian Cancer. Community stoma support varies & can be poor. Make sure you get stoma nurse advice. Chemo can swell or shrink stomas and there is the risk of sepsis and a blocked bowel with chemo. Always a bigger worry with a colostomy. Mum Mum starts chemo next week. Ref bags ring / google suppliers and get some free samples. Salts have a very good aloe vera adhesive less harsh. Drainable bags probably better that closed as output can vary on stoma and as you say she has a virus. Diet advice is BRAT i.e. banana, rice, apples to firm up bowels. Avoid stringy high cellulose foods like celery and stringy green beans these are hard to process. Eating every 3 hrs can help bowel function and digestion. Also get a good laxative that doesn't bulk up the poop like sodium doscuate. You should be asking Drs for advice esp if she's lost weight as you say.

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