Disappointed and sad

[Maxjor]

Hello All,

I made a promise to let you all know how immunotherapy--offered as first relapse treatment was going and yesterday came the results. Its been 8 weeks, 4 infusions--lots of side effects, and then the scan. I have progressed. It was in a small area on one side of my abdomen and now on the other side of the abdomen and the "vaginal cuff" (have not looked up what that is yet). My ca125 was 84 when I stared and now is 256. Onc said I should go on standard treatment to get back to NED, then a PARP (Olaparib) for maintenance. He said there are more trials IF (I love when they say IF) I need them later.

Its strange, I feel like crying when writing to you all---my safe place. Almost like I failed and disappointed my family. They of course don't feel that way but this worries them and then I just feel worse.

It was actually this site that got me to ask for different treatments. My onc wanted me to consider Carbo Taxol again and I said I wanted Carbo Doxil because I relapsed after in only 7 months after Frontline. He did agree, but said it will knock me out of a few clinical trials (having Doxil now). But said it was a good choice because Doxil is less harsh than Taxol. One treatment every 4 weeks for 6 months, then (I guess if NED) onto a PARP. He said if Rubraca is approved for maintenance by then, he will consider that one too but for now he thinks Olaparib.

I knew it was a long shot but it has worked on others.

They tell me Doxil will make my hands and feet crack and possibly blister and wants me to use lotion 4X a day (how do you use lotion on your feet 4X a day when you work?) And do any of you have any words of wisdom for Doxil side effects? And was your regimen the same? Every four weeks? They also said I could have become allergic to Carbo after frontline. I didn't know that. Starting on steroids a few days before first treatment. Any advice, input, etc. more than appreciated. Gloomy outside, gloomy in my head. oxoxox

[Purple_k_in_Oz]

Oh I’m so sorry to read this. And I sorry to think you are feeling so down. But.... I also think it’s so brave if you to have stepped into the unknown land of immunotherapy. Even though it seems it hasn’t worked for you, you tried! And there are other options for you which may give just the result you need

Your feelings of failure and despondency are so normal. They will ebb and flow and that’s ok! You’ve got this! Xxx

[Maxjor in reply to Purple_k_in_Oz]

Thank you for such a very helpful response. Nice to know this feeling will dissipate or come and go. Oxox

[lorraine71-Australia]

Hi Maxjar, I'm sorry to hear that your treatment did not go as well as you and your oncologist would have liked, he sound like he has a plain for you.

I've been on Daxil it is called Caelyx here and if you go to the top right hand side (Seach my ovrtcome) type in Caelyx ou will find quite a few post about Caelyx treatment and advice from the ladies about the side effects.

As I said I'm on Caelyx with very good results, I had 6 months one every 4 weeks, had some side effect but did manage the full treatment, with all chemo's we are so different it works for some and not for others, it's prove to be the best so far for me worth the try...Take care Lorraine xx

[Maxjor]

Thank you Lorraine. I didn't know about those areas on the page for researching things so I now will do that. So happy to hear it has been good for you. Onward! Oxox

[Hidden in reply to Maxjor]

Good advice from Lorraine.

Are you sure you want to take a step which might knock you out of clinical trials? It might be worth asking more about this. I wouldn't want to have done that and you do get to a point where juggling courses of action to maximise opportunities becomes quite a challenge.

I've written about Caelyx too. I had only a partial response with it but found it very easy to tolerate. The main thing is to assume the worst and do all the preventative stuff before you start with it re mouth ulcers and moisturising ( I used Aveeno). It's very drying, and not just hands and feet. Be prepared for every orifice being uncomfortable and lubricate all as appropriate.

So disappointing about the immuno/

Good luck

[Sunfleury-UK]

I seem to remember a lot of talk a few years ago about the benefits of 'udder cream'.... Sx

[Neona57]

I am so sorry that the immunotherapy did not work although I have read some posts suggesting that it takes a long time for it to kick in. I am hoping to get on an immunotherapy trial but also have the option of caelyx. I recurred just a few weeks after frontline so will not be given carbo or taxyl again I guess. Do you mind me asking what immunotherapy drug you were given?

[Maxjor in reply to Neona57]

I was in a trial that had Opdivo alone or Opdivo with Yervoy. I got the single agent. Interesting about it taking time to kick in. I'm going back to chemo and my onc said he believes the immunotherapy may provide additional benefits (which to me is strange since I get steroids on chemo and steroids suppress the immune system. )

I had 4 infusions two weeks apart. Many side effects for me. Onc also told me I can do other immunotherapy in the future if needed.

[Neona57 in reply to Maxjor]

Have read about immunotherapy but it is rather complicated and I don't have any background in science and biology. I can't get my head around the steroid thing- especially if you are getting them with immunotherapy.

[Maxjor in reply to Neona57]

Not getting them with immunotherapy. They said having had it may make the next treatment (Carbo/Doxil) work better---that is when I get the steroids. So that is why I question it (will ask the doc on my next visit).

[Rlenesue]

Hi Maxjor.... I was wondering how you were doing on the carbo/doxil combo... I started this today as my 2nd line of treatment. Same regimen as you. Then I will also go on the same parp inhibitor.... I am braca1 positive so hopefully the inhibitor will fix the gene mutation and stop producing cancer cells.

Please let us all know how you are feeling?

[Maxjor]

Hi Rlenesue--Good timing! I just got the results of my CT scan--this was done after the effects of treatment #3 (so almost 4 weeks after that infusion and right before #4) and its working well. I had two measurable tumors and the are "greatly reduced" in size (less than half their size), other nodularity is gone, "unremarkable" organs--all of them. Love that word! So its working. CA125 is (was) 13 when I had the 4th infusion (last Friday) down from 256 when I started. My onc believes I will be NED after the 6th infusion. My platelets are borderline---that is, they were 106 at the 4th treatment and they won't do the treatment if under 100 so he moved my 5th infusion to 5 weeks, not 4, and said this is fine and "normal" in order to get the platelets where they need to be to avoid not getting treatment at that time. Once done, as you know, I start Olaparib as maintenance.

Once the 4 or 5 days post treatment passes ( nausea and chemo brain) life goes back to normal for the duration till the next treatment. Lots of time and quality time. I also swim almost daily and try to keep it up even when I don't feel great. So far, have been able to. I am able to do everything else--work, exercise, socialize, etc.

Hoping you will get the same--or better--results! Please keep me/us posted on your progress. Did you have your first yet? If so, could you keep us posted as well?

Wishing you all the luck, little or no bad effects, and going for NED!

ox Judy