News could be better.

[Helmar]

Hi All...After two treatments of Taxotere/Carboplatin, which has worked brilliantly for me in the past, my CA.125 has increased by over 3000 in those two months... and now stands at 9000. Bit of a shock as this has happened while on the above treatments. I've just had the third one last Thursday, as scheduled, and my Oncol. is hoping that maybe I will see some reduction this time around, but I won't hold my breath, as it's worked really quickly in the past. Looks like I may have to go onto something else in the New Year if my CA.125 is still up on Jan 4th. Just asking for your thoughts on the following suggestions made by my Oncol. Doxil seems to be on the menu..:-) that worked well for me last year, but I had many large and sore mouth ulcers, so that was a 'downer'. He has also suggested Avastin, but with the risk of bowel perforation (I've had Ulcerative Colitis for many years) I'm not too happy about this one. Thirdly, he thought about having a portocath put in, and washing my abdomen with  chemo. Not sure if this would work, as I've had ovca for almost 4 years now. Trying to get a surgeon to do the operation is a problem because of the adhesions, and mess already in there. :-)
Any thoughts or suggestions would be welcome, as I'm at the crossroads. No quite sure which way to jump on this one. Any other drugs that could be tried?
The strange thing is I am feeling really well, still have a good appetite, and live a very active lifestyle, so this disease is really hard to figure out. My Oncol. says 'numbers are only numbers' and not to worry, as my scans of last month showed now new growth since December last year. Sort of a mystery why the numbers are jumping so high.
Thankyou for any comments. They are much appreciated... Hope all is well for everyone...Hugs..Helen...

[Helmar]

Thankyou for your support.. and yes, we could do with some snowballs here Marty.... it's pretty warm at the moment. I hope you have a great holiday in AZ too.

Becky and Chris... I wish you both well, and gee Chris.... chemo on Christmas Day is awful. Couldn't they defer it for a couple of days for you. I hope you are still feeling well though.
Becky, I'd love to send some sun to you... it's sounds so cold there for you.

Have a lovely Christmas everyone....hugs...Helen...

[crecco]

Sorry to hear about you numbers.But it is good that you are are feeling well, and I hope that continues through out the hloidays. Iam one of those currently on chemo but thankfully this Topotecan doesn't hit me too hard (esp since I wil be recieving chemo on Christmas Eve day) I will keep yo in my prayers that whatever your onc decides to put you on will bring those numbers right back down. Love Chris












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[msjazz]

on the oxygen question, we do home oxygen as a business. when i saw that, i asked a doctor and the oxygen will not penetrate the outside of the cancer cell. that s the reason it doesn t cure our lung cancer patients. there are alternative products, like oxy e, that you put a few drops in your water that claim to oxygenate the cancer cells. i bought one at the health food store called cell food. i didn t use it the whole time only sometimes, it made the water taste strange.i have heard a lot of testminials about  getting your body alkaline working, that it is the same effect on cancer cells, but you have to really change your diet. now that i am back on chemo there is so much i can tolerate eating.suppossedly cancer cells can t live in alkaline body. the cottage cheese and linseed oil is suppossed to oxygenate cells also, but there was a  diet to follow with that also.

[SimplyStar]

Lets all throw snowballs at Helen. ---OOO---OOO---OOOs.  Kids made a great big snowman out in my frontyard yeaterday.  As cold as it is , I look for him to be there till Spring.

[Tybear]

Hi Helen...I'm really sorry to hear about your latest string of numbers. I really don't feel sometimes that they truly reflect how we are feeling. I'm actually feeling really well at the moment...but I'm sure according to my CA125, it would say otherwise! As long as you are feeling well, go with that. I too, am really nervous about the bowel perforation risk with Avastin. I think though that if I looked back at all the side effects that went along with Taxol and carboplatin, I'd probably see really bad ones there too, that I never got. I guess we'll never know until we try. It's hard to imagine though, putting ourselves through chemo when we are feeling quite well...how sick we have to make ourselves, so we can be "better".
I hope the sun is shining for you 'cause where I am, we're having one heck of a snowstorm!
Take care,
Becky

[Helmar]

Thankyou girls...it's good to have your support.
Ronni... Thanks for your kindness... and I hope all is going great for you in Costa Rica. :-)

Mitzi.. hi..and yes, I live in Australia and love it here. Where was your hubby when he was here? I live down near Melbourne in the State of Victoria. The weather is generally mild compared to other places, so I like it.

Diana14...Your prayers are very welcome... thankyou.

vrw520...Thankyou for your prayers too.. and I wish you and your family a lovely Christmas also. :-)

Ruth...I've had Caelyx before and it worked well. It's the Avastin that I'm a little scared of re bowel perforation, and apparently this happens in about 3% of patients. As far as I know, Caelyx has a coating that doesn't make it as harsh to take as Doxil, although they are basically the same drug. This is what my Oncol. tells me. I hope the Caelyx does a good job for you Ruth.

Wishing everyone a good day.... and hope the sun is shining for you all...hugs....Helen...

[EchoUK]

Helen,

Just a thought on the Doxil, apparently there are some differences between Doxil, Caelyx and Myocet and I wondered if one would be any kinder to you regards your risk of bowel perforation?

Love,

Ruth in the UK xx

[vrw520]

I am sorry about your numbers. I am thinking about you and praying for you. I hope that you enjoy your Christmas and have all those that love you around you. You are in my prayers.

[Diana14]

you are in my prayers

[lillmisstn]

Helen,

Just wanted you to know that I am praying for you ... Are you in Australia? My husband was there for a lenght of time ... He loves it there as I can imagine you do too ... I hope that you feel much better soon ... I hope that your numbers go down so that you can have some peace of mind, its a priceless thing to have when you are ill .... Keep your faith up doll

blessings

Mitzi

[vegas2cr]

Just sending warm hugs and love from beautiful costa Rica.. no advice only want you to know I hope you continue to feel well... Ronni

[Helmar]

Thankyou so much girls, for taking the time to give me your input. It's a busy time of the year, and I really appreciate your thoughts, kind words and ideas, when you all probably have heaps of things to do. I guess I've learned to live with the high numbers, and as my Oncol. has explained to me.. some of us do have these high numbers, and some don't, due to the generation of the antigen that apparently determines the CA.125, so I'm not overly concerned, but would love to see them come down some. I suppose while I'm feeling well, and still able to do what I want here, I shouldn't grizzle. :-)  I'd love to put some of this lovely warm sunshine in a jar, and send it over to you girls in the Northern Hemisphere. I just can't imagine snow at Christmas, but then you probably can't imagine 100%F in the kitchen slaving over a hot dinner. :-)
I hope those of you who are presently undertaking chemo, feel well enough to enjoy your festivities, and I wish everyone here all the best for a lovely, and happy Christmas.
Thinking of you all, and appreciating your nice friendship here. It's great.   Happy,Summer hugs to all...Helen...

[PF_PVD]

I also want to add that I am sorry to hear about your numbers.  As hard as I am hoping my numbers will be way down next week with the results, I will hope the same on yours.  Since this is my first-line tx, I can't advise on anything new to try, but I am happy to hear you are at least feeling well.  I actually thought about you today as we are surrounded by all these piles of snow and hoped you were enjoying the start of your summer there with maybe a nice glass of wine.  

[freshair]

Helen,
It really s.... having this happen when Carbo has worked wonders for you before. I hate this. I wish we all could keep taking Carbo/Taxol when need be but this nasty insidious invader gets its way What about oxaliplatin and doxil or oxaliplatin and 5FU as Jatoo is having luck with his wife Melody.  I think the only problem is that the 5FU may cause diareha. You could ask him.  It may be my next one.

This CA125 is weird. My numbers when up to 500 after I became resistant to Carbo/Taxotere (doubling after the Carbo brought them down some) But the 500 is a small number compared to yours and I have a lot going on. So please don't be discouraged with the numbers. Just as quickly as they went up, let's hope they come down. See what your doc says about the oxalplatin in combination if you think that is a good suggestion.

Sending you warm toasty fireplace hugs,
Helen

[rmarie]

Helen, that is not what you need to hear before Christmas, sorry for the news, it stinks.  I hope the numbers go down and it was a lab fluke.  Maybe Doxil won't be so bad this time,  Do people perforate with much ulcerative colitis?  I would check that out and if not, give avastin a try.  
You are a fighter, thinking of you  
Marie

[katems]

Hello Helen

I'm sorry to hear that your numbers have risen. I do sympathise because I also am one of those women who have really high numbers and although I would like to think that numbers are just numbers, I can't help but worry when mine leap up by the hundreds or thousands.
I was 7,200 when diagnosed and after 8 carbo/taxol still couldn't get below 371 so no remission for me. I'm now on Caelyx and last CA125 was over 3,000. I have a scan on Friday and we go from there.

I admire the way you cope so well with all the treatments you have had - you are an inspiration to us all. It is surely a good sign that you feel so well. I don't seem to suffer from major side effects (fingers crossed) but feel weak, tired and slightly queasy all the time which does get a bit wearing. I don't have any really helpful suggestions to make - I'm sure other ladies will have more information to give you but I do believe there are lots more options for you to try. I just wanted to say that I am thinking of you and wishing you a happy and warm Christmas from a chilly UK!

love
Kate in the UK
x

[EchoUK]

Hello Helen,

So sorry to hear that the current cocktail isn't working.  It is a bit if a mystery this CA125 thing isn't it?  Like you I haven't come anywhere near the magic lower numbers but I feel quite normal most of the time. If I hadn't had the ascites in the first place my original 6000 would have passed unnoticed by me. I haven't had the result of my last CA125 but it must be about 2000 by now. I can't offer advice regarding next treatment for you but I am sure your oncolgist will come up with an answer - you seem to have a very 'switched on' one.  You have done so well up to now and there seem to be more alternatives coming along all the time.
I started Caelyx yesterday - wasn't looking forward to it having had a bad reaction to Taxol but all went well - had bags of ice on my feet, icepacks on my hands and ice cubes (too big - must take smaller ones next time!) in my mouth. No side effects at all yet but they don't kick in until the thirdish treatment I gather. It is probably a bald head, minimum booze and can't taste the food Christmas for me again this year but there you go!

Keeping my fingers crossed for you in your next treatment - there will be one there to suit I am sure of it.

Many hugs,

Ruth xx

[SimplyStar]

Is that cottage cheese made from Kangaroo milk?   lol

[coogeegirl]

What a bugger about those numbers... Unfortunately Helen I have no knowledge of alternate drugs for you to try but while you and your doctors are deciding on your new chemo drugs  I agree with Marty's suggestion about perhaps trying some alternate approaches in your treatment..

My suggestion to add to Marty's other two is have you thought trying Joanna Budwig's Flaxseed and Cottage Cheese diet??? If nothing else at least you will be getting some essential Omega 3's into your everyday diet.

I am glad that you have a good appetite and will be able to enjoy your Christmas dinner, I wish you all the very best in your search for a successful chemo cocktail.

Hugs from your fellow Aussie

Jenny

[SimplyStar]

This is probably off the wall advice, since O2 kills cancer cells, why does no one ever pump pure O2 into a belly, say like for a few hours??  O2 does not hurt healthy cells, just the cancer cells.  Also those that have a abdominal port, why not do a flush of ginger  for a few hours once a week.  Is it because the pharmacuticals and the onocologists don't want to use the cheaper , natural things  that we have been told kill cancer.  I like most of you do research and read some of the most outlandish things, some of which work and others that don't.  What happens when a cancer patient goes into the doctor and suggests a different thing be done, if the other things aren't working?  They have developed  antidotes for most poisons now by taking the poison and altering it neutralize the poison.  They use chemo to kill cells, is there a better way to neutrlize them.  Has any one tried taking the actual cells from each persons cancer and altering it , injecting it , and let nature take its course. If they can change our DNA,  they should be able to change bad cells into good ones.  Told you I was off the wall tonight, but I am doing some deep soul searching, not just because of Leslee , but because of all  you Ladies that this damn disease has its claws into. Sure wish I had another 50 years to kick these ideas around. Gosh that would make me 127, but most things get better with age, except  my eyesight and my teeth.  Hope for the best for you Helen, I truely do.

[Brownie3321]

Hi Helen. I'm so sorry to hear of your recent news, I'm sure with the way you have been feeling, you expected better news. I would take the fact that you are feeling so great as a good sign. Since this is my first treatment of ovca, I'm not sure of any other drugs. What I was wondering is if you have had the IP chemo treatment through the stomach? I have such chemo brain and can't remember who on this forum has had the IP. Could this be something you try or bring up to your onc? I'm sure some of the other ladies will have more info for you, but I am thinking and praying for you. With love, Deandra