My story

[sunny]

Hi All,
After a brief shrinkage and stability tumors have started growing again.Gem/Tax stopped Now they want me to try pazopanib.Hope I can tolerate it.
Surinder

[PaulW]

Hi Surinder,

I’m sorry to hear that your disease is progressing once more. On the positive side, I can say that I had relatively few problems with Pazopanib. I also found it very convenient with it being in tablet form, much better than going to the hospital for an infusion.

If you do have problems with side effects then you could always discuss reducing the dose with your oncologist. The normal dose is 800mg / day but I have seen many people on the Acor LMS forum who have been able to overcome side effects by reducing the dose to 600mg or 400mg / day.

Very best of luck to you,

Paul.

[sunny]

Hi Paul,
Thank you very much for your reply.It is so challenging to get good advise here in Australia.Now my previous oncologist is suggesting to give high dose of chemo directly to the liver with advanced vascular access system which will cause almost no side effect.
I don’t know what to do at this stage.I know Pazopanib not always work for every one but it has rare but risk of liver failure associated with it.If I remember it did not work for you either.At the moment I was advised 400mg a day dosage .I am more interested to see other doctor who might accept me as patient and do some chemoembolisation.
Surinder

[sunny]

Hi All,
Started Pazopanib 400mg on 13th this month,worst side effect is mouth sores and it’s getting worst despite doing lots of mouth washes.
Its unfortunate that ethics committee is not approving me to enroll in a trial for Intra-Arterial Liver Isolation Chemotherapy Using an Implantable Vascular Access System because of my cancer type.They are enrolling patients with adenocarcinoma with liver metastases and HCC (heptocellular carcinomas) only.

Best wishes,
Surinder

[PanP]

Hi Surinder,

Is it not possible to ask for the chemoembolisation treatment off-trial? Sometimes it’s possible to get a treatment on a ‘compassionate use’ basis. It would probably need a bit of a push from you and your team to get it, but there’s no harm in trying.

Pan

[PaulW]

Hi Surinder,

Sorry to read about the mouth sores. I don’t have any experience with these, none of the chemo treatments I’ve had have caused this problem for me including pazopanib. I’m sure you will get some responses from the people on the ACOR LMS list. Also I’m unaware of any other LMS version of the trial you mention.

I do hope that you manage to make progress on both of these issues and that the pazopanib does a good job for you.

All the best,
Paul.

[sunny]

Hi Pan,
I have requested them that I want try chemoembolisation with cisplatin/docetaxel on my own risk and I am ready to sign any paperwork in case anything goes wrong.No answer about that so for. I am feeling continuous pain on right side of my tummy,saw GP and he says tumor might be causing it indirectly.Stopped Pazopanib for about a week but mouth sores are not getting better.
Look like hope is fading away.Never valued my life when I was young that much but when I look at my kids I feel that I need to be around no matter what.
Doctors are always surprised when they see me.I don’t know what to make of it when they say you look so well.
Surinder

Attachments:

• chemosarcoma.jpg

[PaulW]

Hi Surinder,

Just a quick thought regarding the pain you are experiencing, I went through a period of having quite some issues like the one you describe, I was given fentanyl patches which I’ve been using since then, I found that they really helped – overall they were more effective for me than just using oral morphine. Everyone is different of course so they may not work for you but they could be worth a try.

Best wishes,
Paul.

[sunny]

Thanks Paul.I have fentanyl patches but haven’t used them,as the pain is not too severe at this stage.There is more of a mental pain as treatment options are exhausting.Going to see my oncologist soon,I hope he could come up with some sort of plan.
Kind Regards,

Surinder

[PanP]

Surinder, have you looked at mindfulness meditation as an aid to stop the mental pain and anguish you are going through? I know from my own experience it works, and there is plenty of medical evidence that it has a direct effect on stress hormones. There are measurable effects in the body and these are all positive against cancer.

Pan

[sunny]

Hi Pan,thank you for your reply.Everything including mindfulness was working as long as treatment was working.It’s impossible for me take my mind off cancer no matter how hard I try and more hard to believe that doctors are running out of options in 2014
Today I was happy as I saw another liver surgeon who believe that he can take out 90 percent visible cancer safely but he will try for 100 percent.If his team says yes I will go for this risky surgery whatever be the outcome.
Best Regards,
Surinder

[PanP]

Well, fingers crossed then. When do they make the decision?

Pan

[sunny]

After Monday’s meeting with his team and my oncologist.I am seeing him on Wednesday and hopefully he will have plan by then.
Surinder

[sunny]

This team has also decided that surgery will not be a good idea as it involves significant risk right now and will not cure the cancer.This liver surgeon is also not in favor of chemoembolization and other ablation therapies as he thinks these therapies can make future possibility of surgery very risky.Now stuck with Pazopanib. very sad day.

Surinder

[PanP]

So sorry to hear that Surinder. Let’s hope that the pazopanib is effective.

Pan

[Author]

Posts