Axitinib / Inlyta

Phoenix Rising said:

The coughing problem

I forgot to mention the onc believes the cough is caused by the location of the tumors in my lung.  He said cough was not a common side effect of Inlyta, but I read with my own two eyes... and I read pretty doggone good, contact lens prescription is up to date, too..... anyhoo--I read cough is a side effect.  Needless to say, I've been off the Inlyta at least 3 weeks and that cough is still hanging around, and now it comes with lots of mucous and post nasal drip.  I noticed yesterday that when I juiced pineapple, ginger, lemon and carrots, the cough and post nasal drip slowed down.

Well, I'll kick myself out of the Inlyta thread since I am no longer on the drug and can't offer any insight.  I'll probably start a sutent / gemcitabine thread once it gets underway.  That combo is a trial, but I will be doing it off trial.

I've been away for awhile.  Sorry.  So much is going on in our lives.  My husbands MRI was negative.  Woo-Hoo!  He continues on 7 mg of Inlyta.  His biggest complaint is exhaustion and it certainly is a difficult thing to live with.  If there is a good active day, then it is followed by 3 days of incredible exhaustion.  I really wonder about how other people manage to be able to bike ride, cycle ride, run, weight lift etc..  I'm so happy for those who are able to enjoy activities like that.  For us, a little walk is the best we can do.  And dont get me wrong...I am thankful for that too.  The next scan will be the beginning of April.  Feels like a vacation, the time between scans.

Phoenix:  I'm so sorry to hear about the change in your condition, but I'm truly hoping that the new drug you are going to be on works for you.  That drug was mentioned by our oncologist as a future choice also.  It makes sense that your cough could be from the congestion in your lungs.  However, I read, the same as you, that a cough is a side effect of Inlyta.  I guess not a common one, but a side effect nonetheless.   Would you mind sharing why your dosage of Inlyta wasn't increased?  I would like to understand.  Our oncologist is trying to get my husband to 10 mg as the best dosage.  My husband has chosen to stay at 7mg.  He doesn't like the side effects at 7mg and figures it would be that much worse at 10mg.  Was it the same for you?  I do hope you let us know how you are doing.  Maybe start a thread for the new medication that you are on.  I hope you tolerate the new plan well and have improved scans.

Nano:  How are you doing?  I hope your hip pain is gone now, and that you are still feeling really well.  I know you are on  7 mg.  Do you plan on taking 10mg? 

David:  That's a great scan result!  That was only two months of being on Inlyta.  Please post how you are tolerating the 10 mg dosage.  I hope you continue to feel well and enjoy your bike riding.

a_oaklee said:

been away awhile

I've been away for awhile.  Sorry.  So much is going on in our lives.  My husbands MRI was negative.  Woo-Hoo!  He continues on 7 mg of Inlyta.  His biggest complaint is exhaustion and it certainly is a difficult thing to live with.  If there is a good active day, then it is followed by 3 days of incredible exhaustion.  I really wonder about how other people manage to be able to bike ride, cycle ride, run, weight lift etc..  I'm so happy for those who are able to enjoy activities like that.  For us, a little walk is the best we can do.  And dont get me wrong...I am thankful for that too.  The next scan will be the beginning of April.  Feels like a vacation, the time between scans.

Phoenix:  I'm so sorry to hear about the change in your condition, but I'm truly hoping that the new drug you are going to be on works for you.  That drug was mentioned by our oncologist as a future choice also.  It makes sense that your cough could be from the congestion in your lungs.  However, I read, the same as you, that a cough is a side effect of Inlyta.  I guess not a common one, but a side effect nonetheless.   Would you mind sharing why your dosage of Inlyta wasn't increased?  I would like to understand.  Our oncologist is trying to get my husband to 10 mg as the best dosage.  My husband has chosen to stay at 7mg.  He doesn't like the side effects at 7mg and figures it would be that much worse at 10mg.  Was it the same for you?  I do hope you let us know how you are doing.  Maybe start a thread for the new medication that you are on.  I hope you tolerate the new plan well and have improved scans.

Nano:  How are you doing?  I hope your hip pain is gone now, and that you are still feeling really well.  I know you are on  7 mg.  Do you plan on taking 10mg? 

David:  That's a great scan result!  That was only two months of being on Inlyta.  Please post how you are tolerating the 10 mg dosage.  I hope you continue to feel well and enjoy your bike riding.

 

 

Well right now I am mostly scanxious.  I go in for my next full-body nuclear bone scan followed by a CT-scan of the Abdomen/Chest/Pelvis with contrast tomorrow.  I won't hear the results until Thursday...

But if it is working I plan to suggest that we go up to 8mg x2 next.  Slowly making my way up to 10mg x2 if possible.  The only major side effect I have experienced so far is that my voice is very hoarse.

Regardless, I will let you know how it is really going in a few daze...

DMike said:

Combo Info

Hi Phoenix,

Please start a thread on the sutent/gemcitabine meds. I'm interested and I'm sure many others are too. Also, no need to leave this thread. You have a lot of experience to share. I wish you the best wiith sutent/gemcitabine.

 

a_oaklee,

Thanks and I'll post on how things are going on 10mg. 3 days in and all is well.

David

Good luck Nano! You're due!

GSRon said:

Yo Nano guy... good luck, but

Yo Nano guy... good luck, but I am betting you get good results..!  See you in Sunny Eggo..!

Ron

Looking forward to it Ron!

But I am right coast guy.  So is that how San Diego is pronounced out there?  I've got a lot to learn and so little time...

Thanks for the words of encouragement.  I find Inlyta to be a very strange drug.  I have no idea if it is working on my liver mets but, unlike Sutent, it clearly was not controlling my bone mets.  At least it wasn't at the 5mg x2 dosage.  So I am a bit pessimistic.  Anyway, I'll find out soon enough.

a_oaklee said:

thinking of you

Neil,  I will be thinking of you.  I have this feeling that you are most definitely going to have great results!  Think positive re scans! 

I do appreciate Neil that you tend to be precise in answers that you give.  For instance, you wrote 8 mg X2.  I am going to try to be better at that myself.  The 7 mg my husband takes is indeed twice a day.

When you feel like it Neil, could you please briefly tell me why the fullbody nuclear bone scan and a CT with contrast is your choice for follow-up scans.  My hb has a PET/CT with contrast done of chest abdomen and pelvis.  What is the advantage or reasoning or differences in the follow-up scan choices please? 

My hb's voice is hoarse too.  He's unhappy about it.  We haven't been offered anything that can help with it other than a symptom specialist said perhaps a lozenge (of some sort) would be helpful.  ?  It didn't help.  We do notice that the quality of his voice is better in the morning, and when he needs to sound his best (business), he has water nearby.  Kind of helps it from getting too raspy.  If you come up with anything helpful, please let me know.

All of you are in my thoughts and my prayers. 

Annie

 

Hi Annie.  Thank you very much for those kind words of encouragement.

I don't have any solution for relieving the hoarse voice.  My feeble understanding is that this may be due to a restriction of Nitric Oxide production to the vocal cords.  If so it would be similar to what is behind Hand-Foot Syndrome (for those taking Sutent).

The PET scan is based on the Warburg Effect which was discovered by Dr. Otto Warburg starting in the mid 1920's.  He was the first to realize that all tumors have dysfunctional cell metabolism.  In particular he showed that many tumors derive most of their energy by the fermentation of glucose by the process known as aerobic glycolysis.  This process does not utilize any molecular oxygen at all.  It is one of the most primitive ways that cells can derive energy (it's how all bacteria derive their energy, for example).  However, it is extremely inefficient.  To get the very same amount of energy that any normal cell can derive through the standard respiration of oxygen (in the process known as oxidative phosphorylation) the tumor cell must consume far more glucose.  It most cases it can be up to 30 to 50 times as much.  Regardless, the PET scan relies on this fact and just looks for any tissues that are drinking up excess glucose.  These areas are then termed "metabolically active".

Unfortunately, most renal cancers (and prostate for that matter) are not very avid for glucose.  Why?  Because they are usually slow growing but more significantly because they can derive energy from the fermentation of nutrients other than glucose.  They can also ferment certain amino acids.

So the bottom line is that a PET scan may fail to spot all the mischieve that renal cancer may be up to in one's body.  The CT scan does not suffer from that limitation.  The full body nuclear bone scan is not a PET scan either.  It works by injecting and tracking a radioactive substance (not glucose based) that is slowly absorbed by the bones.  Active lesion areas will "light up" where there is unusual activity - be it bone growth or destruction (lytic lesions).

Hope that makes sense.

Best wishes,

-N

DMike said:

Good Scan

Good luck tomorrow Neil!

David

Thanks David.  About to depart in 5 minutes...

GSRon said:

Neil, good luck on the

Neil, good luck on the scans..   OK, I looked at the revised Advocate/Patient schedule..  They are going to work my you know what off..!  It starts early morning and goes to late night.!  There is a lot going on there for sure..!  

Later..

Ron

Well now you know why I decided to pay my way.  Believe me, it is totally impossible for anyone to digest this conference in one pass.  Every single day there are multiple sessions going on all at the same time and starting some days as early as 7am and some days going past 9pm.  It is lunacy.  The only solution is to choose which you will attend as best you can and then watch everything else that was missed after the conference is ended (via Internet access for the next several months).  In fact I still haven't finished viewing all the sessions from last year...

I do hope you and I get a chance to share a dinner or two though...