Not sure why I haven’t found this forum before but looking through many of the discussions I see the value of sharing ideas problems and solutions.
A little about myself.
i was diagnosed with a grade 3 type 2 papillary cell carcinoma on my right kidney in December 2008 and underwent a nephrectomy .i was then placed on active surveillance until January 2014when sadly I had developed metastasises on both lungs and thoracic lymphadenopathy. At that point I signed up for the Star trial for Pazopanib. Unfortunately I had to withdraw from the trial after only 3 months due to hepatotoxicity.
I was then given Sunitinib at 50mg in January 2017. This had to be reduced to 25mg due to Palmer-plantar erythema and thrombocytopenia. By April 2017 the Sunitinib had stopped working and the disease was progressing..
Nivolumab immunotherapy was the next course of action with fortnightly infusions which I tolerated very well until January 2018 when the disease again progressed..
In June 2018 I began taking Cabozantinib starting on 60mg daily. Toxicity required that I gradually reduced to 40mg and then 20mg daily and other than a sort break to undergo a course of radiotherapy to reduce a mediastinal lymph node and a 18 month suspension of treatment as scans showed stable disease, I have been tolerating treatment quite well.the main problem side effects being mouth ulcers and palmar -plantar..
8 weeks ago disease progression was noted so had 3 weeks of full 60mg dosage with some quite awful moth ulcers to the point where eating and drinking was very painful. I am now back on 20mg daily and will be scanned in approx 4 weeks time to see if the 60mg blitz has had the desired effect.
When I look back in this way it sounds like my life has been dominated by nothing else other than cancer treatment but this certainly has not been the case. 14 years ago when first diagnosed I like most people,,when they realise they have cancer, think that this the end. Well it hasn’t been for me. In between periods of troublesome side effects I have managed a fairly active life, traveled far and wide and been determined that I am living with cancer rather than allowing myself to think I’m dying of cancer.
What I have found amazing is that during my 14 years journey SO FAR, new treatments have been developed which gives me hope that if when my next scan shows disease progression there may be something else to take the place of Cabozantinib.
in the mean time I will tuning in to this forum to hear about other experiences..
Wow what a journey and I love that you are living with the cancer rather than using the term dying. I have stage 4 metastic lung cancer and currently on a trial checking out a new chemo targeted th
apy tablet. 14 months in and there are signs of progression with a lesion on my spine. Have to wait two weeks now before I see the oncologist and hope there is a plan as all other mets in liver nodeand spleen along with primary have shrunk quite a lot and remain stable. It's my first period of not knowing what comes next but your post has filled me with hope as I am still working looking after family volunteering and reasonably healthy I am willing to do all I can to live as long as possible. Thank you
