Not the news I wanted or was expecting

[Calluv]

Just had my appointment with oncologist to get the results of my 4 cycles of Carbo l, the last of which I had yet another reaction to and they didn’t finish. In the 3rd one my CA125 was 31 and today as of number 4, it’s now 35,yes, going in the wrong direction. As my lovely doctor said, “ not the best result”. He is now suggesting another blood test in 3 weeks and if it’s the same just wait and see but if it goes up into the 40’s he wants to start me on 4 weekly Caylex. I have no symptoms and feel quite well apart from the effects of the so called cure. To look at me I am the picture of health and my bloods and immune system is high side of normal, which I attribute to my naturopath and his herbs and bio resonance treatments. So not the news I was hoping for for Xmas but what can you do, no use wallowing.

Can any of you tell me of your experience with this particular drug. I’m going to have to have a port from now on as veins are not in good shape anymore after 22 infusions over the past 3 years. I know some of you will probably say, “is that all” but I’m not complaining really, lol. So also anyone had a port and info on that. It’s all so daunting and I think after all the time it’s finally hitting me how relentless this surge is.

Any info would be appreciated

Thanks and Merry Xmas and a great New Years to everyone

[LittleSan]

You look wonderful. I'm sure that's a great foundation to tolerate your treatment. Having a port fitted is unpleasant but not absolutely dreadful and definitely worth it. Dig deep, you can do this. 💐😘

[Hidden]

Hi I have just finished 6 cycles or carbo/caelyx and have found it to be relatively easy on symptoms the worse being fatigue which can be debilitating I imagine especially if you are working. After my 5th cycle only I had terrible diarrhoea for about 10 days. I am surprised your doctor wants to start you back on chemo with such a low CA125 reading. I thought chemo was only used once recurrence had been confirmed via a CT Scan or you were getting symptoms, I had no symptoms and even though my CA125 was 1080 because my CT scan was clear my Oncologist was happy to keep me on "watch and wait" The longer you can leave between treatments the better. I think if I were you I would be looking for a second opinion, or at least requesting a CT scan if your marker continues to rise. 35 is within normal range and it may have crept up a little for another reason. Good luck xx

[Calluv in reply to Hidden]

I was having symptoms like diarrhoeaand constipation etc plus the count starting to riseI had 2 ct and per scans plus an MRI and they showed nothing. My surgeon then wanted to do a laparoscopy at 75 and found al sand like nodules all through my abdomen, hense the 4 doses of carbo to get me back down to 10 or thereabouts

[Seasun36-uk]

Hello Calluv,

To me it doesn’t seem a big increase in the CA125...but obviously needs a re-check. Have you had a recent CT? That’s the definitive baseline isn’t it?

I am on 4 weekly Carbo/Caelyx, only had my first one but coping well.

No major side effects, a few headaches & tummy cramps in the first week.

You have to be careful not to get too ‘hot’ eg. on waistbands/ under your bra etc. I’ve had a mild rash in these areas, used E45 itch relief cream.

Wishing you all the best. You look great in your photo!

Linda x 🎄🌟✨☃️

[Calluv in reply to Seasun36-uk]

Thanks Linda, yes it’s very hot here right now and I am getting itchy rash around my crouch area, very uncomfortable and I thought it was due to the carbo

[Lindaura]

Dear Cal,

I think it is great that your Onc wants you to start Caelyx right away. I am not a fan of “watch and wait”, because CT scans are fallible, and do not always reveal the sneaky spread of this disease and waiting for symptoms is tricky.

Meanwhile, I see you are in Australia, so I am not certain how the Port Insertion is treated there.

Here, in the UK, most good hospitals do this procedure under sedation, but many do not. I have had both and I consider that without sedation it is truly barbaric.

You must insist on sedation, because this is not a simple procedure and it can be both extremely uncomfortable to downright painful.

The USA always uses sedation or a general anaesthetic for the Port insertion.

Once you have the port, and it has settled in, it is marvellous, making blood draws and infusions much easier.

I also did well on Caelyx, but gave in to bed rest for the first 7 days of each cycle, when fatigue is overwhelming. After that, you will get almost three full weeks of near normal energy.

I wish you the best of luck and hope you manage to enjoy the holiday season before you start the new treatment.

Hugs from across the world,

Laura

[Calluv in reply to Lindaura]

Hi Laura are you in the US lived there in California for 22 years

[Lindaura in reply to Calluv]

I am from California, LA and San Francisco, and my family is still there, but I have been living in the UK now for 25 years!

The NHS has treated me very well.

I don’t see that much difference between our treatment options, except for that horrible sedation Free Port insertion at my local hospital and we don’t have to worry about prescription insurance and co-pays, etc.

I wish you all the best for your ongoing treatment.

Hugs,

Laura

[Neona]

Yes I have a portacath- it is brilliant. Make sure they give you one that can take contrast dye- mine is a Powerport. Operation was simple and easy- I opted for heavy sedation- woke up and it was all done. Only problems are lack of training of staff in local hospitals and some A&E units .

[Maxjor]

Beautiful picture, beautiful lady! You are the picture of health. Isn't it amazing? I am in the US but my onc almost would not let me decide (maybe cause Stage 4th generally relapse more or so I think) and it was easy (as someone else pointed out always under anaesthesia) and quick and I have had it over 3.5 years, used a lot--scans, blood tests, chemo, etc. and I hardly feel anything when the needles goes in. Best thing I did after collapsing veins caused tries and re-tries till I would cry. Wishing you luck and hope your experience is a good one if you do decide to go that route. oxoxxo

[Calluv in reply to Maxjor]

Thanks for the info

I. Lived in California for 22 years

[ruthg55]

You look gorgeously glowing! Long may it continue. I’m surprised at your doctor’s comment & suggesting chemo if your CA125 increases more without further testing first. I’m also in Australia (Melbourne) & the team I see recommend PET scan before deciding on treatment. (In my recurrence, surgery was possible with no further treatment). I thought CT scan only shows if there is a mass but can’t tell if that’s cancerous or non-cancerous. Only PET is more accurate. Guess what I’m saying is, that I would want to be sure the CA125 rise is definitely caused by increase in cancer cells - before deciding on treatment. Wishing you all the best ❤️🙏🏻

[Calluv in reply to ruthg55]

Hi there

Thanks for your reply. I had 2 ct scans and a pet scan back in October that showed nothing but my ca 125 went up to 75 so my surgeon did a laparoscopy and there it was, sand like nodules all through my abdomen. That’s why they did the 4 treatments of carboplatin but the last 2 I reacted badly and the last one I couldn’t finish

My ca 125 was 165 before the treatment and 31 after 3rd and after 4th 35 going in the wrong direction as the oncologist said

That’s why he’s recommended caylex if it’s over 40

I don’t want it as I’m sick of feeling sick from the cure but everyone says you have to fight

My body is so stiff and sore even more now than after the original 18 weeks of treatment in 16/17. I was NED for 27 months when the count started to go up and I started with symptoms

I used to be a professional ballroom dancer and teacher back in the states and now my feet are so numb my balance is s—t and my hands a sore. My naturopath gives me supplements to fight the bad effects of the treatments and keep me as well as possible. My bloods are as healthy as and the oncologist is always surprised they are so good he laughs when I say you can thank my naturopath for that

I’m just feeling a little defeated at this he moment what with bad family issues with my partner’s grown kids, xmas and missing my own son who was killed 18 years ago it’s all just getting to much

I’ve always been very up and positive but I guess I’m running out of grunt

Sorry to run on I really do appreciate your reply

Hope you have a great xmas as I know the heat and fires have been awful down there

It’s been hit here in Brisbane as well and we’ve had fires too

The world does seem to be going mad

[ruthg55]

Thank you so much for your reply, sorry for my delay - I’m on holidays in the Philippines at the moment.

I apologise, I probably jumped the gun with my comment, not realising all the tests you had already. And I’m truly sorry to hear about your son. I’ve lost close family, but I don’t think that can compare to losing a child. That is hard to bear.

I know how you feel re treatment. I used to say to people I’m actually healthy, it’s the chemo making me sick. No denying it does get to you. I think only people on here get it. What got me through those days was thinking of my little 5yrs old great nephew in Scotland who had a rare childhood cancer the same time as me & he had to go through 18mths of treatment & surgeries. Statistically we’ve got about the same outcomes, but touchwood we’re both ok currently. I get really annoyed that the rare cancers don’t get equal amount of funding & therefore treatments basically haven’t changed in decades.

Like you, I’ve always been super optimistic but having a recurrence guts you. We walk in a minefield & nobody else can understand that. But ... a bit of hope for us ... that we can avoid the mines for a long time yet! I think a lot of women here who have had Caelyx have said it’s not too bad, hope that’s the case for you.

Sorry I’ve gone on a bit. Hope your Christmas brings you peace, love & definitely some laughter!!! (I just had tears streaming down my face watching a YouTube video on a British comedian James Acaster

- if you feel like something light & hope you enjoy 😊). 🙏🏻😊

[Lizchips]

I did cysplatin and taxol, when cysplatin became to strong switch was made to sister drug carbo mix.. Ask about taxol, you loose your hair, but it's only hair, grows back. My Dr combines drugs. I'm in the US. Best wishes for better results. Have a happy healthy new year, liz

[Cat-33]

Calluv, I am just reading all of this and wondering what your naturopath prescribed for you that has you feeling so well? What herbs and "bio resonance treatments" are helping you?

I have been taking curcumin, vitamins D and B12 as well as upping my exercise, water and vegetable intake. My CA-125 has been raising but we are doing "wait and see" until it reaches the level where inflammation finally appeared at first recurrence. This has taken seven months so far but I am paying attention to what you wrote about finding "sandlike nodules" (usually due to ascites). Appreciate you sharing your journey with us.