Isabel - *NEW UPDATE #346 10th November *

[hermione25]

*UPDATE* here https://DIBB.in/14166898
Hello lovely Dibbers.

Some people had been asking after Isabel so I thought I’d post an update. Unfortunately she’s been in hospital for the last 16 days (bar a brief home visit of 48 hours). During this time she has been quite unwell, mainly with the increasing pain in her hip and spine but also as a result of a severe reaction to antibiotics which caused her entire body to be covered in angry, itchy hives and unfortunately is being fed through an NG tube, initially because of mouth soreness after the radiotherapy to her jaw but now to support her lack of appetite.

Due to the lack of progress, the consultant decided to give her a staging scan on Monday to reassess her disease and treatment plan.

There was mixed news from the scan yesterday. The primary cancer in the kidney and in the adrenal glands show some shrinkage, so the immunotherapy has had some effect. However, despite the radiotherapy the tumours in the spine, hip and jaw have not shrunk or even progressed further, which we had considered to be possible ourselves with the increased pain she had been experiencing in her hip especially. There has also been some growth in the liver.

In light of this, they have decided that it is necessary to stop the immunotherapy and move onto a targeted therapy instead. The consultant thinks this will be more effective against the tumours in the bone as well as still working on the soft tissue cancer as well. He indicated that we could see a reduction in her bone pain in just a couple of days. Unfortunately this therapy only comes in the form of a daily tablet. Ironically, Izzy had a PICC line fitted, an NG tube inserted and all other kinds of awful procedures but frustratingly remains unable to swallow a tablet.

The consultants are liaising with the drug company to see if it could be delivered crushed via the NG tube initially while we work with a psychologist on trying to see if we can get Izzy to be able to swallow it.

I asked the consultant if this therapy is effective in reducing the tumours in her bones, whether at a later date, it could be possible to return to the immunotherapy, as it has already shown to be working on the primary cancer in the kidney and other soft tissue areas. He said although this was clinically possible, at present NHS England won’t fund a 2nd attempt once you’ve moved to an alternative therapy. I told him I didn’t want him to dismiss this option if it was clinically viable as we would find a way to fund it privately if he thought it would be effective.

He did add he’d had another patient who’d had to stop after one cycle, but that the immunotherapy has already ‘switched on’ their immune system and 2 years later that patient was still in remission so there is obviously long lasting impact from even just one immunotherapy cycle.

Although we have had one setback after another I’m trying to remain positive that they are still giving us options to try. Isabel is finding it hard but if we can manage her pain so it’s not constant I think she’ll be able to be more positive about her options.

Thank you all for your continued support and good wishes. The Dibb remains somewhere I can come in the dark hours in the middle of the night to think about happier things and hopes for the future

Amanda x

[Melbatb]

((Amanda))

Thank you for the update on Isabel. What a brave young lady she is being.

Wishing you all the most positivity possible in Isabel’s treatment.

[christybell]

Your family are in my thoughts xx

[Orlando 2004]

Thanks for the update. I hope the new treatment helps Isabel. X

[loola30]

Life can be so, so cruel and unfair at times. You and your family are in my thoughts. Wishing for positive news for you all going forward x

[Colette-S]

Sending you lots of love Amanda. We will all help you through your dark days xx

[JoJo88]

Thank you for taking the time to update us, I think of Isabel often.

Wishing you all the very best as Isabel continues to fight this dreadful disease.

Take care x

[MichelleT]

Sending you big hugs, Isabel is so brave Xx

[travelbug0456]

Thankyou for updating on Isabel - you are all in my thoughts - sending love and hugs and hoping her pain is under control soon xx

[caj]

Tough times for you all. I'm glad you find distraction in the dibb ... there is certainly all walks of life going through everything here!