Crummy news at MD Anderson

[SuzanneKau]

I’m low grade primary Peritoneal 3C. Been coasting on Letrozole for 22 months (a long run) but now cancer is progressing rapidly. Doxil (different name in UK) is next for me. Wasn’t expecting this at all. Kind of in shock and feel this is a game changer. I’ll search for posts on this drug. Can anyone help me with the name used for the drug in UK? Thanks

[Artgreen]

I’m so sorry to hear that. I am not aware of it having a different name in the U.K.

Have you read Jane McLelland’s book “How to starve cancer”? I’m taking low dose aspirin which is being trialled here with other cancers as an anticarcinogenic. There are other supplements and foods/ drinks which are also supposed to target the tumour growth including bergamot (Earl grey tea) and green tea, vitamin c in high doses but the book explains it.

My oncologist isn’t in favour as it isn't the NHS protocol although he was ok with the aspirin.

The Care Oncology Clinic are recommended on jane’s Facebook page. Again he doesn’t rate them but the repurposed drugs suggested are cheap and seemingly are effective for some people.

There is no research into our cancer other than what we are doing for ourselves on the cureourovariancancer.org and the good news this weekend about the parp inhibitor oliparib doesn’t apply to us I have just found out a few minutes ago in the UK. It looks like the starving cancer options are hopeful though .

I do hope you are able to get it stable or shrinking very soon.

Sending hugs

Alex x

[SuzanneKau in reply to Artgreen]

Thanks Alex. I will look into the book. I’ve taken low dose aspirin for 15 years for risk of stroke due to high cholesterol. As you say, the book should explain the rest. Thank you!

[WorriedHusband]

Doxil is called Caelyx in the UK.

[busbee3]

Hi SuzanneKau.

Doxil in the UK is called Caelyx, same as in Canada. I was put on Caelyx when Letrozole stopped working. Unfortunately, it didn't work for me. However, statistics show that there is often an active response in Low Grade with Caelyx. My oncologist was quite optimistic that it would work for me. It works slowly, which is why they don't like to check CA125 or do a CT scan prior to being on it for four months.

I'm now on weekly taxol and they want me to add Avastin to this every 21 days, starting in a couple of weeks. Good luck! PS. You aren't supposed to lose your hair on Caelyx, just get some minor thinning, however, mine fell out after round 2, just like frontline. Everyone was surprised.

[Hidden]

Hi Suzanne. I had Carbo/Caelyx/Avastin for 6 months. I'm high grade 3c. Caelyx is a tough drug. Has a lot of side effects. After my 2nd dose, when I could barely eat due to the dreadful mouth ulcers, my onc reduced the caelyx by 10%. I won't say it was plain sailing after that but it was manageable. As said above, it's said to be a little slow to show results and you barely lose your hair - 10% my onc said and he was right - no one noticed except me that I was a bit down on hair (and my hair is fine).

It's a red drug and it turns your hands an orangey colour. Don't worry, it doesn't affect your face, so you won't look like Mr Trump. It can give you little cuts - like paper cuts - on the palms of your hands and take the strength from your hands.

I went straight into remission at the end of the 6 months. It was a hard time but I'd do it all again. Good luck. Pauline,

[SuzanneKau in reply to Hidden]

Trump, haha! Made me crack up. What a sorry excuse for a president we have right now. 🙄 My apologies to the rest of the world!

[Tesla_7US]

Ice your hands and feet before and during infusion to protect from neuropathy and hand/foot syndrome. I did this each time and it worked. Also use sunscreen religiously because caelyx will make your skin extremely photo sensitive.

[Shorty864]

I was on Caelyx and Carboplatin for 6 months - did not suffer from many side-effects and lead an almost normal life - worked even in my allotment, but unfortunately it did not do anything for my cancer, so went back on Carbo/Taxol which is for me is a heavy choice, but my bloods are normal now, so has you see it is very different stories for different people. All the very best to you. Xx

[Solange]

I'm so sorry to read your news, Suzanne. I think it's almost as traumatising to be given that news as it was when first diagnosed. Just want to wish you good luck with the treatment and send a big hug. Love, Solange 😊

[Superkim]

Hi Suzanne

I'm also low grade serous adenocarcinoma and started Doxil (and Avastin) in May. I just had my 3rd round last week. Things to look out for (my experience so far) are mouth sores and hand and foot syndrome. During infusions I ice my hands and feet. I also suck on ice chips. After the second round my I started getting blisters on my toes and the creases in my palms started to become red and painful. I did some online research and saw that some people recommend moisturizer with 10% urea - so I started using it. The blisters have cleared up and my hands are much better. For my mouth, I rinse with warm salt water and baking soda.

Everyone is different though, good luck!

Hugs,

Kim

[SuzanneKau in reply to Superkim]

Thanks Kim. I hope your follow up scan shows great results! How do you ice hands and feet during infusion? I’m imagining buckets of ice water with my hands and feet in them!!

[Superkim]

The chemo nurse brings me ice packs that stay cold for about 1/2 hour each. I perch my feet on top of two and put the other two on my up facing palms. The infusion lasts an hour, so I go through 8 packs. Also make sure you are really moisturizing you hands and feet twice a day.

[SuzanneKau in reply to Superkim]

Thanks so much!