I think they are going to stop the treatment

[Hectoria]

Hi there,

I am on weekly taxol and avastin, and last week I suddenly lost all feeling down my left buttock and the back of my left thigh. It has not come back. I have been getting more and more painful bowel spasms and throbbing pains after every weekly infusion, and from what they say I think they are going to stop the treatment. I am devastated as I have had a good response so far, but they are worried that the bowel may perforate. My onc says she does not think I will get remission anyway, so it is back to the drawing board. I am worried I am running out of options as I am also carbo resistant.

[January-2016-UK]

Is it perhaps just the avastin that may be dropped? I've read that it can cause or exacerbate a number of bowel problems.

[Hectoria in reply to January-2016-UK]

The problem is they don't know whether it is the avastin or the taxol that is causing the problem. I would be quite happy to drop the avastin and continue on with the taxol. I have only managed 5 weeks out of a possible 10 so far because of various complications with wisdom teeth, liver enzymes, blood counts and now an inflamed bowel. What bothers me is that they have no idea what is happening in the bowel or what's causing it, yet my treatment might be stopped as a result. I sometimes think they just don't really care if we live or die as they have so little faith in their treatment protocols. Sorry, I just feel shocked at their attitude.

S x

[Purple-iris in reply to Hectoria]

Hi

Just seen your reply . Surely they will need to do a scan , X-ray or something to check what is going on with your bowel if they suspect something . Even if they stop your treatment as a precaution until they get results . I had an X-ray when they suspected a blockage . Also had to miss a cycle of Avastin when I had problems with eye and headaches so sent for urgent MRI but once tests confirmed ok was allowed to continue .

Maybe talk to them about what their plan is and if you do not feel confident ask for a second opinion .

Kim x

[Hectoria in reply to Purple-iris]

I had a scan 2 weeks ago and there was absolutely nothing there. But the flare up had already died down by the time I got the scan. I feel like it is the blind leading the blind. S x

[Purple-iris]

Hi

I can imagine how concern you must be but as January suggests it may just be the avastin . I had to delay starting it due to issues with my bowels and then they wouldn't start until after my surgery when they knew there were no complications with bowels . Remember my oncologist saying that it is one of the major side effects and they will not take any risks of causing a bowel perforation .

Maybe it would be worth ringing the Ovacome helpline after the holiday and asking their advice about other chemo options available to put your mind at rest. I am sure your team will have something in mind , the waiting is always difficult . I hope your leg and bowel pain improves . I ended up in A&E with terrible pain which they thought was a blockage which turned out to be severe constipation. So painful was making me sick and spasms like I was going into labour !

Hope you are more comfortable soon . Make sure you keep your CNS informed so they can suggest something for the pain . Love and best wishes Kim x

[Hectoria in reply to Purple-iris]

Thanks Kim. My onc seems to think it is a reaction to the Taxol, not the avastin. However, I had 18 weeks of taxol 3 years ago with no problems, so it would make more sense that it was avastin-related. They have mentioned putting in a stoma so I can continue the treatment, but that seems ridiculous to me when they don't know what is causing it and what it actually is. To me it feels like a flare up of diverticulitis, and is now feeling much better after having missed treatment for a week.

[Purple-iris in reply to Hectoria]

Glad you are feeling alittle better and hope they get to the bottom of what's causing the issue so you can continue your treatment . Kim x 💜

[January-2016-UK in reply to Hectoria]

Do have a chat with the Ovacome nurse and with your CNS. You need to be clear what is being proposed and why. Would you need a stoma to continue with the present treatment or to start a new treatment plan? You might also like to seek a second opinion as the best way to proceed. All the best!

[Solange]

So sorry to read your post. It must be a very worrying time for you. Hope something is sorted out for you soon. 💐🤞

Love and best wishes, Solange 😊Xx

[Hidden]

Hi there I am glad you are feeling a bit better so obviously your flare up is caused by one of the two. So could they just try taxol again on its own and see if you have any symptoms. To me it seems the obvious thing to do. If you are not happy with your Oncologist could you look for a second opinion.

[Eriksendi]

I am on carbo and taxol and suffered severe bowel pain which resulted in a perforation and em surgery to fit a stoma. I've had one more treatment since and it was fine with the stoma. I hope you manage to get it sorted. They are not sure if my perforation was due to a spot of cancer on the bowel or diverticulitus yet. They'll only know when they do surgery if the chemo has done its job.

[Travelmonster]

Hi Hectoria,

I am currently undergoing my first round of chemo, had 5 cycles so far and am due to have cycle 6 this Thursday. I see from your post that you are carbo resistant and so far carbo seems to have done nothing for me as my CA125 has continuously risen. During a conversation with my oncologist last week he told me that there is a drug they use for recurrence in platinum resistant/platinum refactory people called Caelyx. It might be worth asking about that if you haven't already tried it.

P

xx

[Hectoria]

Thanks everyone who has replied - it's very much appreciated as one can sometimes feel so alone battling this bloody disease, especially when things don't go the way we hope.