Not what I wanted for Christmas

[Lymetree]

Well I saw my oncogist this morning. Carboplatin and Taxol worked for first two chemo rounds but by third the cancer started fighting back and is growing. They plan to start me on Capecitabine for which I am having a blood test as its dangerous for some people, and Oxaliplatin in the new year. Onviously I am none too happy as the idea of 3/4 chemos, op and then a few more chemos and I'm done is now fading into the distance. Looks more like I will have months of fighting ahead? Also Oxaliplatin can maybe cause more nerve damage in hands and feet than Taxol? As someone who does art work I do not want to lose sensation in my hands so I'm feeling pretty bleak at mo. Sorry to moan. X

[Lindaura]

Oh, Lymetree,

You have every right to moan.

That is dreadful news!

And now you are about to embark on a radical treatment plan that very few of us, if any, have ever experienced!

Both these drugs work on the cancer’s DNA and both sound a bit harsh.

The capacitabine sounds a bit like Caelyx in its side effects, so I think you can manage this with the appropriate anti-nausea meds and good moisturiser for hands and feet. It’s tablets, so I hope they are easy to swallowi.

The Oxaliplatin seems to have Taxol like effects, so you are right. They should adjust the dose if you start feeling it in your finger tips.

You probably have looked at this already, but here’s some info:

cancerresearchuk.org/about-...

chemocare.com/chemotherapy/...

chemocare.com/chemotherapy/...

I wish you had better news for Christmas,

Hugs,

Laura

[Lymetree in reply to Lindaura]

Thanks for the links you provided I have found it very informative. X

[Caroles1]

Hi love,

Sorry you are going through a tough time at the moment, you need to write all these questions down for your team, so you know what you are dealing with.

I personally don’t know the chemo you are being offered, but some lovely lady on here may be able to help, but I would advise you to take someone with you and ask the pertinent questions you need answered before you embark on a new treatment.

Lots of love and a happy Christmas to you,

Carole xx

[Coldethyl]

Sorry the news wasn’t better - the drugs you have been offered are more routinely used to treat bowel cancers and I believe they are often used in States to treat mucinous tumours which are thought to start in places other than the ovary such as appendix - oxaliplatin does cause neuropathy so no one can say that your hands won’t be affected - only you know how much your artwork means to you so it may be worth asking if they offer hand and feet cooling - some units have things similar to cold cap to use on extremities when on chemo causing neuropathy.

Thinking of you x

[Lymetree in reply to Coldethyl]

Thanks Coldethyl for your comments. I was warned that Capecitabine tablets mean you have to be really carefull to keep your hands and feet warm or nerve damage can happen that way? I have yet to look into all this yet but too upset at the moment to do anything.

Thanks

[scraggs in reply to Lymetree]

So sorry to hear this. I have yet to have chemo as I havn t gone for my first check .I have mucinous type and hope I don t have to take any .Also the intestional type but primary and all is in control for now .I have MS and have neuropathy in my hands and feet and I think I could paint if I could paint .lol Sometimes it sounds worse than it is. I hope that you have a better New Year.Sounds like you have been through h ll.

[delia2]

I’m so sorry about your bad news, especially at Christmas! I think you need to emphasize to your team that you are an artist and need your hands. I paint and am worried about this too. Good luck with the new treatment. Xoxo

[Maus123]

Hi Lymetree. That's not what you were hoping for.

But: You could have a shot at avoiding or minimizing the nerve damage by applying cooling to your hands (and feet, if you like). A bit like using the coldcap, only for your extremities. Even if your hospital does not offer this type of cooling, you can do it yourself.

I did it during the Taxol infusions and my hands are fine. Still caught some neuropathy in my feet, which I believe might be due to not having proper close contact with the cooling elements i. e. user mistake. You never know but it's not excessively expensive, so why not try?

Essentially, for cooling your hands during a 2 hr infusion (plus some time before and after, so about 2.5 hrs) , you'd need:

- ideally 10 medium to large size cooling gel packs (the blue kind which can be heated or frozen, and stay flexible even at - 18 degrees; usually those can be bought in a pharmacy very cheaply) , or maybe freezer elements or 0.5 l water bottles

- space in your freezer for them, prior to chemo day

- some space in the chemo ward's freezer if possible, on chemo day (still works without this, if needed)

- a good portable cooling box like you'd bring to a summer picknick (well padded or electric)

- pair of thin cotton gloves to wear underneath

- pair of thick roomy mitts to wear on top (or pocket style wash cloths)

- ideally someone to help you switch them during chemo

- hot tea or a blanket

Then you just freeze the gel pads, bring them to chemo in the cooling box, and get started about 15 mins prior to starting Oxaliplatin. You'd fold the frozen gel pad, stick your gloved hand in it, put the mitt on top and swap the elements every 30 mins or so (take care to keep your hands/fingers cold but not frozen e. g. make a fist or move your hand around a bit during the first very cold minutes if needed). The used packs get put to a side so the rest stays cool. The last pack you'd leave on for at least 15 mins past the infusion.

Best of luck. Xx. Maus

[Lymetree in reply to Maus123]

Thank you Maus123 for your very informative cooling suggestions. However I was warned that I have to keep my hands and feet warm while on Capecitabine as nerve damage can be caused that way? I have yet to look into this but will do some research when I'm a bit less upset. X

[Maus123 in reply to Lymetree]

Ah, I think that's for afterwards... when you're back home (not during the infusion) , but your onc team can clarify that for sure. Best of luck with it in any case. Xx. Maus

[anniec11 in reply to Maus123]

That is very useful to know, Maus123. Thank you you very much for passing this on. My sisters has just had her first round of chemo Carbo/Taxol but nothing like this was even mentioned to her. I wonder, is it too late now or would it still help for the second round?

[Maus123 in reply to anniec11]

I'm not sure it might be still worth a try. xx. Maus.

[Petrolhead]

Hi

Real bummer that the last regime did not work for too long. Your new regime is the one that Gershenson the worlds leading expert in mucinous at MD Anderson in Texas uses for first line treatment. It is also used as first line treatment for mucinous in Ireland ( south) so certainly a good combo to go with. This regime is also known as FOLFOX in the US and other places. The leading OC Prof at the Marsden used this regime on an acquaintance of mine 3 years ago who had mucinous.

Good advice on the cooling from others. Some people use linoleic acid (spelling?) to try and prevent nerve damage but some oncos do not like it but worth looking into.

Best of luck

Fay

[Lymetree in reply to Petrolhead]

That's very interesting to know especially as I'm finding it difficult to find much info on ovarian mucinous. How did your friend do on this regime? I'm thinking I won't find many people with my type, either because it's rare or worse, they simply didn't make it? Sorry not being cheerful! X

[Petrolhead in reply to Lymetree]

She had treatment in 2015 and is doing ok.

She was stage 1C. (I think grade 1)

If you are on Facebook there is a mucinous group that you might find useful. It has mainly American posters but might help. It is a closed group so you have to apply to join. I am not on FB but did look at some posts a while ago through my partners FB. However they stopped him being a member as he is a bloke!

Fay

[Lymetree in reply to Petrolhead]

Thanks for that I will look into it. X

[Neona]

Have a look into L- Glutamine to help stop neuropathy. I was a music teacher so was very worried about this but didn't get any neuropathy. The L- Glutamine is a little expensive but well worth trying. The oncologists in UK don't seem to know much about it but I found lots of info on US sites. Think I took 30 mg twice a day but will need to check- or 30 g?

[Iwillbeatit]

Hi Lymetree

So sorry to hear your bad news. I am suffering from peripheral neuropathy after 6 rounds of carboplatin and paclitaxol which I found out last Wednesday have not worked so no operation. It's a b a d time of year for bad news I really sympathise. I really feel for you with your art. I have to say my feet are worse than my hands which drop things but can I recommend acupuncture which I have weekly in feet lower legs and hands which definitely helps. Keep smiling don't let it beat you.