November 30, 2011

November Review

After 12 weeks on Cabozantinib (XL 184) things are going OK. I wish I could say GREAT, but I am also not complaining!

I started the trial on August 30th with a 25 mg dose. During the first 6 weeks I didn't notice any side effects, however I did notice an increase in bone pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.

On November 1st my dose was increased to 125mg. This dose was determined per the trial requirements. We were concerned about that high of a dose. [At this time I was on both 2 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for a rough beginning on the month.

After trying multiple over the counter laxatives, I finally got a prescription variety that started working right away. On the flip side, after six days on the higher dose of the trial medication, I was experiencing nausea that was unbearable at times. The doctor suggested I stop taking the medication for three days until the constipation and nauseas was fully relieved and then a smaller dosage would be suggested.

With both the nausea and the constipation under control, I started the trial meds again on November 10th at a new dosage level of 75mg. The following twelve days were spent readjusting the pain meds, laxatives, etc., and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few smaller tumors that had cleared up completely and most others had noticeable reductions in size.

75mg may still be too high, I still have occasional nausea issues. I'll stay on top of this over the next few days and talk to the doctor if it continues. We are trying to work around a limited appetite and I am suffering from fatigue. I have lost about 12 pounds. The best news is that I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.

Happy Holidays everyone, peace be with you all!


Anonymous said...

That is great you are already seeing an improvement on the bone scan. I hope the side effects will be more manageable. Thanks for letting us know how things are going.

Your friend,

Anonymous said...

To see tumors in bone shrinking at all is a wonderful thing! If you can deal with the side effects, I hope and pray that the tumors keep receding! You are such an amazing man and if anyone can get through this, YOU can!!! Of course, that's easy for me to say, since I'm not going through it. I am sending my love and all positive thoughts!

Anonymous said...

I am thrilled to see that XL184 is working for you My husband was diagnosed on August 12, 2010 with stage 4 prostate cancer at age 42. He has been on Casodex, taxotere and just recently Zytiga, which all have stopped working. We are gwtting scans on December 8th at Sloan Kettering to see if we are eligible for the trial XL184. My fingers are crossed that this drug will help my husband with his bone pain, and help to shrink the tumors throughout his body. Hang in there and stay positive. God Bless!


Sherry Luttrell said...

Really nice to hear David!

Sherry & Terence

Dayna said...

You are always in my prayers and this sounds like good news to me. Positive hope and prayers coming your way.

Anonymous said...


Great news about the improved scans. Very great news. Thanks for the update.


melvyn said...

Good to hear such positive news David and even better to hear you sounding like your old 'up and at em' self.

Been having a tough time of it myself lately and am seeing people at the Royal Marsden in London next week - hopefing I may get on the cabozantinb trial - think they are trialling a dose of 100m.g.

Good night and God Bless you!


Peter Crescenti said...

Great news, hang in there Dave.. :)


Anonymous said...


It's so terrific that you are responding to the XL184 and by the way thank you so much for posting your treatment experiences for everyone to see. I don't know if you realize it but you give people hope that are dealing with this monster and here you are fighting it yourself. I search the web daily (more like every other hour) hoping to see some kind of new drug or miracle breakthrough. My husband is young like you with stage 4 and now we live our lives in three week intervals. He's responding extremely well with the taxotere - psa 1,000 down to 5.3. His oncologist says it's rare to get a great response like that. So far he has had 5 rounds. They gave him a break since the psa was so low. It's really something how men respond so differently with each treatment. He didn't repond to the homone therapy very well. He still gets eligard injections but hormone therapy only lasted 5 months and that was the triple therapy added with casodex, eligard and avodart. I'm glad to see new advances being made in reseach and treatments. It's about time! Please don't give up hope. You're the best!


Scott said...


This is wonderful news!! I am still following your progress and think of you often. You, Mary and Brad remain in my prayers. Have a wonderful Christmas and Happy New Year!

God Bless,

Scott Bonnallie

Anonymous said...

Great news on the mets! Hang in there with everything else, hope you continue to feel better.

Beth L.