AFeiner

[AFeiner]

My 59 year old sister has made me her adovate. She was diagnosed with mucinous cancer but they can’t determine primary. She had a hysterectomy to remove mass on ovary but she still has cancerous nodes near her colon and in her lungs. She’s starting chemo (Carboplatin/taxol) next week. BUt from what I’ve read here it doesn’t always work. (i need to add our middle sister died from lung cancer at age 56 and was not a smoker ). It needs to be noted that we are at a cancer center but there are very few patients who have my sisters cancer

[Bossa]

Are you or your sister on Facebook? There is a mucinous ovarian cancer support group to share info, experiences and support x

[AFeiner in reply to Bossa]

Thank you!!!

[Hidden]

Carbo taxol are the usual first treatments and are doable, make sure your sister has a supply of prunes in prune juice and light Carrs Table biscuits. There might be a day she will feel under the weather and she may get constipated hence my suggestions. I wish you and her well on her treatment

[AFeiner in reply to Hidden]

Thank you!!!!

[AFeiner in reply to Hidden]

My sister Jodi wants to know any food suggestions she should also eat while on chemo

[kristinaapril in reply to AFeiner]

Food choices tend to be a rather controversial topic when on chemo.

In my experience, diet tends to get ignored unless chemo symptoms arise. For example, chemo made my mom constipated so doctor recommended avoiding high fiber foods and she also took laxatives. Doctor also recommended ginger root/ginger tea to help nausea.

I would double check with your sisters team regarding dietary/nutrition just in case they do have something to add!

Kris x.

[AFeiner in reply to kristinaapril]

Thank you!!!!

[Lindaura]

The Carbo/taxol regime totally destroyed my cancer. Hooray!

But, I had a lot of trouble eating in the beginning. Everything tasted awful and my poor husband shopped every day for something I could stomach. So be prepared to try everything from cream cheese on toast to cheerios.

Keeping hydrated is really important. Have plenty of bottles of water at hand. I always have 2 by my bed and 3 in the fridge. Also, in the first week of chemo you have a nasty taste in your mouth, so a fruit juice she likes (pear or peach nectar) are good to have on hand.

I also had the opposite digestive problems and suffered from diarrhoea, so no prunes for me.

Fatigue and breathlessness are another side effect of both the cancer and the chemo, so tell your sister to relax and let herself rest in bed and not try to maintain her pre-cancer lifestyle. Her job is to get well; to heal and endure and let the chemo do the work.

I was pretty much bedridden by my cancer, and we installed me on the same floor as the toilet and put a large smart TV at the foot of my bed and I could zone out with Netflix during the day and we all watch a TV series together at night.

There are foods that help fight cancer that you can look up (anti angiogenesis), but now is the time to find foods she can eat without regard to anything except palatability.

Hope this helps,

Laura

[AFeiner in reply to Lindaura]

Thank you!!!

[Petrolhead]

Hi

Try putting mucinous in the search box as there has been some discussion on this.

Also do the same on the MacMillan ovarian cancer forum and the Inspire ovarian cancer forum. Inspire is American but can be interesting.

There is an excellent paper by Frumovitz and Brown 2014 about current thought on mucinous oc. Even though it is 4 years old it is still very relevant. Frumovitz works at the worlds leading centre for mucinous in MD Anderson centre in Texas.

HTH

Fay

[AFeiner]

Appreciate the advice!

[Harleeboo]

suck fruit jellies

[Decca4Ever]

In reference to Petrolhead's post... I had a Mucinous Borderline tumour, which I'm hoping won't recur as mucinous ov ca. When I was diagnosed, I did a lot of reading. Some research seemed to say that chemo used for gastro-intestinal cancer was more effective for mucinous ovarian. Tho' since they don't know where the primary is, it may not be applicable in your sister's case.

It might be worth raising this with your oncologist. If you're in the UK, you can ask for a second opinion at somewhere like the Marsden or the Christie. I know the Marsden often works with MDAnderson on trials for other sorts of ov ca.

[Petrolhead in reply to Decca4Ever]

Hi Decca

An acquaintance of mine was in email contact with Dr Gershenson at M.D. Anderson in the USA. He recommended the Folfox regime that is usually used in GI cancer. She saw Prof Gore at the Marsden privately and he supported her in a GI regime at her local hospital. I saw his sidekick at the Marsden as the Prof was off ill and she would not entertain anything other than the std regime.

The international trial GOG 241 headed by Dr Gershenson and Prof Gore was abandoned due to low rates of accrual. However Prof Gore presented a paper on it in the USA and said initial indications were that the GI regime was not any more effective but not enough results to be statistically significant. Interesting to note that the GI regime of FOLFOX is used first line in Ireland for mOC and the number of treatments is 5 rather than 6.

Fay

[AFeiner in reply to Petrolhead]

My sisters medical oncologist at Fox Chase in US recommended Carbo/taxol though another oncologist at another center said Folfox. She is going with the former advice for chemo (1 rd every three weeks for 3 treatments. ). It’s very scary when no one knows for sure what is best for a treatment to fight cancer.

[Sunfleury-UK in reply to AFeiner]

Hi, as Faye has suggested up-thread, there's a lot more discussion about this dilemma on the Inspire (US) site. It seems more common in US to consider FOLFOX etc for Mucinous. THere used to be a specific group which was called something like 'All things Mucinous' so worth a search out..... Its a relatively recent thing to recognise that some (not all) Mucinous OvCA diagnoses had origins elsewhere. It may be on the Inspire pages you will find where experts are.... I was dx Mucinous and my Oncologist was able to confirm that it was OvCa by histology. Best wishes, Sx

[AFeiner in reply to Sunfleury-UK]

Thank you. If Carboplatin/taxol doesn’t work then I know they will try for Folfox as the next treatment.

[Sunfleury-UK in reply to AFeiner]

Seems to be more often used that way.... hopefully surgery and Carbo-Taxol will do the trick. Sx

[Decca4Ever in reply to Petrolhead]

Many thanks, Fay. As I said, I'm hoping that I won't have cause to need this info on a personal basis, but forewarned is forearmed. If you look on my profile you'll find a thread I started about my diagnosis/misdiagnosis, which explains my feelings on this.

Hope you are doing well.

Sue

[Lizchips]

Ask about stomach wash chemo IP Intreparatineal chemotherapy. It gets put into the stomach cavity.ive been cancer free 4 yrs now. I had 2 lb mass removed. It was attached to my colon and engulfed my appendix. I have stage 3c clear cell ovarian cancer. Best wishes and prayers for you and your sister. Liz