My Ovacome
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Opinions and advice needed

Hello lovely ladies, I'm hoping for some opinions on my situation. To summarise what has happened, I was diagnosed with stage 3a ovarian cancer back in March of this year after debulking surgery. I started chemo in mid May with the familiar Carboplatin/Taxol combination, but on the first session I had an anaphylactic reaction to the Taxol, so only managed to have the Carboplatin. My oncologist decided that we would go ahead with the Carboplatin alone - so cycles 2, 3 and 4 were Carboplatin alone, but my CA125 continued to rise throughout. For cycle 5 my oncologist decided to still go with Carboplatin, but add in Taxotere (a sister drug to Taxol), however, I had another anaphylactic reaction to Taxotere, so we still ploughed ahead with the Carboplatin. So now I am 5 cycles of chemotherapy later, with a rising CA125 and according to my oncologist "the cancer is behaving badly" and I just feel the Carboplatin is an absolute waste of time (for me).

At my next oncology appointment I want to try and take control a bit more because I don't see the benefit in continuing with the Carboplatin, but what should I be asking? What should I say to my oncologist? There must be alternatives, but none are being suggested, in fact he was talking about stopping the chemo and waiting till something shows on a scan! I feel it'd be too late by then as it would have spread and I'll be even further down the line. I'm 48 years old and can't really understand why alternatives aren't being suggested.

Any opinions, help or advice is welcome and thank you for taking the time to read this far.

Paula xx

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Hi. I'm almost exactly the same as you. I'm 47 with 3A OC. I've just finished 6 cycles but was lucky and didn't have reactions so was able to complete the sessions of carbo/taxol. I read widely about options and found reference to tumour sampling. Essentially they take a bit of what was removed during debulking and see which chemo drugs it responds to in a Petri dish. The aim being to find something tailored to your personal cancer. I asked my onc about it for info in case of recurrence. He was a little dismissive on the basis that what works in a dish doesn't always work in the live body but said it could be explored if needed at a later date. As you seem to be having issues with drugs it may be worth a question? Unfortunately it won't guarantee you won't have a bad reaction.

Fingers crossed you get a good experience with what you try next. Keep in touch!

Em

X

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I had one lot of carbo & taxol.

They had to low lower taxol by 25% (lost feeling in hands)but added Avastin for next 5 sessions.

I should have continued Avastin but insurance wd no longer cover me.

Hope this helps

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I took reaction after 2nd dose of carbo Paclitaxel. I was put on carbo gemcitabine. Had 3rd and just had debulking surgery so waiting for date for another 3. My consultant said there were a few options but chose the gem.

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Hi Paula

So sorry to hear about your allergic reactions , must have been so scary for you and I can understand why you are concerned about the effectiveness of your current treatment.

Have you tried discussing with the Ovacome advice line ? I think you are right to take control and gather as much info as you can going to your next appointment .

You could also ask them about the process of getting a second opinion . I have read posts from ladies on here that have found it reassuring for peace of mind even if you end up sticking with your treatment and team . Not sure where you are but The Christie in Manchester and Royal Marsden are specialist centres for OC . I asked for second opinion at the beginning of my treatment as was diagnosed stage 4 inoperable . They were fine about sending notes and scans etc to another hospital .

Good luck with your fact finding . Am in Chemo ward at Guys at present waiting for my Avastin . Hang on in there love and best wishes Kim x

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Hello lovely,

I too are on the same combo. I had a reaction to taxol on cycle 2. They stopped it for cycle 3. Had 50% for cycle 4 and 75% for cycle 5. I'm currently back in hospital with suspect sepsis so who knows what'll happen to cycle 6!!

I digress, my understanding of the taxol is that it only does it 5% of the job...

Please forgive me if I've totally got it wrong but I did ask when I wobbled at stopping it at 3.

Hang in there

🌻

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I'm on Carbo only too. Ive had 3 doses CA125 196 at the start. The readings were then 236, 228, 198. So am right back where I started! Dose 4 tomorrow

There are other options available to you but if you are not happy I would seek a second opinion and I would also give up on the carbo if it's not working. As my oncologist would say no value in being poisoned for no reward

LA xx

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Thank you for all your replies, I really appreciate it. I have taken them on board and will definitely ask about tumour sampling and am going to ring the Ovacome advice line.

I have now seen my oncologist and I am digesting what has been said, here is a summary of his advice/opinion:

'He said that Carboplatin is a platinum based drug and there is a term used 'Platinum resistant', which is used where the cancer comes back within 6 months and then means that Carboplatin is then unlikely to work once it comes back as the cancer has developed a resistance to it. There is then another term which is 'Platinum refractory', which means that you didn't respond to platinum based 1st line chemo at all. Oncologists, including him are reluctant to say someone is platinum refractory, because it then takes out all platinum based drugs and leaves very few options, so they only say it as a last resort. Your CA125 has to go up by 50 percent whilst on treatment before they accept/say that. Mine had gone up to 200 last time, if it gets to 230 or more they will say that about me. Apparently this only happens in a very small percent of women, but he realises that mine appears to be heading that way. He said that protocol in these circumstances is to try and continue with the Carboplatin and try and add back in the Paclitaxel. Because I've had anaphylactic reactions to two drugs in this group (Paclitaxol and Taxotere), but it is essential for me to try and have it, in these circumstances they try and do a process called desensitisation where you have to go into hospital for an overnight stay and they administer drugs and try and give you the Paclitaxel in small doses and counter any small reactions, then repeat until they get it all in. There is no guarantee that a. It will work once it's in or b. That you won't have another anaphylactic reaction, but the combination of Carboplatin and the Paclitaxel has been known to work even though Carboplatin is supposed to do 95 percent of the work. If the end result is that combination still does not work, there apparently is only one drug I can have, which is usually reserved for when it returns. The cancer can also build up a resistance to that, so he said that he doesn't want to use up every option open to me if he can get the Carboplatin Paclitaxel combination to work. If I can achieve remission from that he said he wants the last drug in our armour for a recurrence. If my CA125 has not gone down after cycle 8 ( I should have cycle 6 next week), they will stop the chemo and wait for evidence on a scan of the new tumour as he said that sometimes, depending on how fast it grows people can get good quality life for a period of time before that happens and then we still have that last drug as an option.'

He is now trying to sort out for me to have the desensitisation process next week. I do trust in him and currently feel my options are limited, so I'm going to go ahead with it with all fingers and toes crossed that it does actually go in and works. Let's hope so!!!

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Please ask re Avastin.

PARPS are for later I believe.

Also, I have read about trials on this site for immunotherapy.

It's not easy but please try to Stay calm, ( inflammation of any sort. can cause CA125 rise) push strongly for answers & options, options.

Much much success

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Thank you Sherrym, I will definitely ask about Avastin, I've been reading about that over the last few days. When I spoke to my oncologist Tuesday I hadn't got together a list, so I didn't ask about specific drugs and why they had been ruled out. He did talk about various trials that had taken place where some drugs had proven to delay reoccurrence initially, but did not prove to extend overall life expectancy - meaning that those woman had more chemotherapy and therefore all the symptoms and unpleasantness that goes with it, but overall no longer actually living. Then the question of quality of life comes into it.

I'm still trying to digest everything that was said, but meanwhile I am making a list of specific drugs to ask about and Avastin will definitely be one of them.

Pxx

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Hi Travelmonster,gosh he gave you a lot of info to take in.He is correct in saying Carbo is th major fighter against o.c.Taxtol is like a mop.There are many many options opened to you so,I wouldn't fret just yet.I would also hope that your Onc is in on the loop when it comes to treatment.

I know many women who have had their chemo in hospital due to bad reactions in the chemo unit and they can tolerate it much better.Were you given an I.v of antihistamine prior to chemo?

I would contact organisations which deal with o.c to gain knowledge of treatment options and at least have that info for your next visit to your Onc.

Best wishes Annie

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Thank you Annie, it really helps to hear about others who have managed to tolerate it in hospital, despite an initial bad reaction. I started taking antihistamine two days beforehand the second time and had extra steroids to try and prevent what happened the first time, to no avail unfortunately.

The first time with Paclitaxel the anaphylactic reaction occurred pretty much instantly, the machine hadn't even got past the minute marker. The second time with Taxotere it took 5 minutes before the anaphylactic reaction occurred, it could have taken longer because of the antihistamine and extra steroids I guess.

Well, I've got lots of lovely things lined up for the bank holiday weekend that I'm looking forward to, so I'm going to focus on that and leave the desensitisation process as next weeks problem.

Paula xx

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Hi this has happened to me with my first chemo. Last week. I had a severe allergic reaction.

But they gave me extra hydrocortisone and I eventually took it. But wow I did feel poorly.

My next chemo in two weeks and the dr needs to see me to review possibly giving it me at a slower pace. ?

I'm determined to have it cos my dr said and I hold onto his word it's gold star chemo.

X

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I'm sorry to hear that Zena, it really is scary stuff when you have a severe reaction like that, particularly on your first time and it does make you feel so unwell, but I have high hopes for you given that you went on to take it, that's wonderful . I totally agree that you should try and have it if you can. My oncologist says that the Carboplatin /Paclitaxel is the best treatment for ovarian cancer if you can tolerate it.

Sadly my reactions were deemed life threatening which is why they stopped it, but given that the Carboplatin alone doesn't seem to be working for me, it's become essential to try and get the Paclitaxel working and for me that means desensitisation in a controlled environment. However I've heard of many women tolerating it over a 3 hour period, so there is every reason to believe that will happen for you.

I've got everything crossed for you that it all goes smoothly for you. Let us know how it goes.

Much love

Pxx

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Aww thank you. Either way their are many more chemos out there to try. They will find a way.

X

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Do talk to Care Oncology Clinic. Maybe u are still able to tolerate their regimen of drugs & diet

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Thank you, I will take a look at that as well xx

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Hello Paula

Sorry to hear you are having difficulties with treatment, with a rising CA125 I would be asking for a scan to compare with pre-treatment situation and whether the rising marker indicates platinum resistance. If there is no evidence of tumours on the scan, then some of the maintenance drugs might be appropriate (I was given Letrozole which didn't work for me but has helped some women on this site). If you are not having symptoms it is an option to "watch and wait" which is what I did - I waited 7 months, had a great time and, when the symptoms kicked in, went back on the chemo.

Hope you get some better options and advice at your next appointment

best wishes Dawn

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Thank you Bowradawn, I've seen a letter over recent days that my oncologist sent to my doctor and I am due to have a scan at the end of September it seems. Subject to scan and CA125, the "watch and wait" approach has been one of the suggestions. I'll take a look at Lerozole, thank you for that xx

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I heard this morning that the desensitisation process is going ahead with Docetaxel (Taxotere), so it looks like I'm staying in hospital tomorrow (Wednesday) night for pre-meds which go in overnight and then having the chemo on Thursday which will take 10 hours to go in. Off to see my oncologist now, for confirmation, questions, blood check results etc.

Lots of finger crossing and positive vibes that it actually goes in this time! I'm choosing to believe it WILL happen this time.

Paula

xx

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fingers crossed.....I've had two lots of desensitisation regimes, but for carboplatin, not taxol, and managed both fine. I hope you do too. xxx

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Thank you so much Mac27, that is exactly what I need to hear this morning, had my pre meds overnight and fingers crossed after breakfast they will start the process. Feeling a bit anxious this morning and opening my mail to your response has helped. Thank you again. Sorry to hear that you needed desensitisation as well, but so glad to hear that you managed it.

Pxx

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