Axitinib / Inlyta

a_oaklee said:

#100 post

Yes, I really just wanted to be the #100 post under Rons Inlyta thread.  haha

You've given me more to think about.  Need to look up Dawn Phenomena.  I have always thought blood sugar is highest after meals and decreases with time afterwards.  So the lowest reading should be in the morning before breakfast.  Do I have that right? 

I read that you have to stop Metformin before and after scans for a certain length of time.  Were you aware of that?

I'm happy that you have had one week of no side effects.  My husband didn't complain about side effects until he was on 7 mg twice a day for a couple weeks.  That's when he started to feel very tired and very nauseated.  I wonder if the other members who are on Inlyta had their doses increased.  They wanted us to go from 5, to 7, then to 10. 

You have mentioned before how great you feel and have little to no side effects from the Sutent.  I will be interested to know how you are tolerating Inlyta as the dosage increases.  I'm wondering if your careful dietary plan helps with taking this medication too.  I sure hope so. 

 

Yes, your blood sugar immediately spikes after meals and then (should) decrease as insulin is released. 

Ordinarily the liver is constantly removing some insulin from the bloodstream, but during the pre-dawn hours, in response to the release of certain hormones, it clears insulin out of the blood at an accelerated rate.  As such the blood sugar may rise. This is the Dawn Phenomena.

Yes, I am aware that I need to stop taking Metformin around scan time.  Thanks for mentioning it though.

I am slated to titrate up to 7mg twice a day in 3 weeks.  I have no idea if I will be as lucky on Inlyta as I was on Sutent (having no significant side effects).  If I am I would be inclined to attribute it to my diet and taking certain supplements like CoEnzyme Q10 - just as when I was on Sutent.  Time will tell...

I was very surprised to discover that taking Vitamin C supplements in excess of 250mg/day can raise blood sugar.  And that taking in excess of 400mg/day can turn it into an oxidant (rather than an anti-oxidant).  I have just modified my guide to reflect this new knowlege which I learned from a key diabetes expert, Dr. Richard K. Bernstein.

GSRon said:

Hi Neil..!!  For me some side

Hi Neil..!!  For me some side effects started quick.. elevated blood pressure.. some took a while to kick in.  And most recently some escalate at times then diminish..  But the worst / most consistent is the fatigue..  I sleep a bit more than normal.. and maybe doing that is not as good as "forcing" myself to get going...  I do have skin issues, but have no way of telling if that is the Inlyta or the P.V. or the combination.  At times I peel like having bad sun burn and peeling in small patches.  This leaves some very tender parts of my body...  Hope you avoid all of that.

 

I remember reading somewhere that too much of several vitamins can be bad just like too little..  But then you already knew that...

 

I DO expect the Inlyta to work great for you...  I have no doubt..!

Ron

Hi Ron,

Many thanks for relating your experience with side effects and those kind words of support.  The latter greatly appreciated as I have had an "interesting" weekend.  I started to develop some pain in my left femur (a site of one of my bone mets) on Thursday.  I was getting bummed out because it seemed that meant that Inlyta was not working for me.  However, yesterday the pain started to subside and today it is almost gone. So I guess (in my case at least) it takes at least one week before Inlyta starts to kick in.

You did not mention what dosage you are at.  Are you still at 5mg? Or higher? How soon after you started before you started experiencing that fatigue?  As you know I never experienced any fatigue on Sutent even though I was at maximum dosage (50mg/day).  I am pretty convinced that was a direct result of my diet and certain key supplements. 

Incidentally, I may take multiple supplements but I don't take many vitamins at all - only vitamins D3, K2, and (now at a reduced dosage) C.  That's it. I also never recommend that anyone take multiple vitamin tablets. On the other hand I have done extensive research to make extra sure that any supplements I do ingest will not interfere with the targeted drugs I take.

Thanks again.

Is anyone else experiencing a cough as a side effect of the Inlyta?  I am only taking 6mg/day right now, but the cough is bad enough that I can't speak at length without coughing, sometimes within the first word of a sentence, and laughing is out of the question... when laughing it goes from a cough to a spasmodic feeling in the chest and I have to stop and take deep breaths to get back to normal.  When I told the PA about the cough, she just said, oh okay.  I have tried Delsym, and Tussin cough supressants. Tussin works only minimally.  I tried a natural product called Singers Saving Grace.  It stops it in its tracks and allows me to speak, but you can only do 20 sprays/day.  It's also embarassing to spray everytime I need to speak at length.

GSRon said:

I am a bit of an Ars**

Hi All..!  Yes I can be a pain to some at times... but since my Dx, I try to be helpful not only to myself but others...  Here is a link to an article I just found.

http://energyfm.net/cms/news_story_297372.html

I e-mailed a detailed response to the radio station.. not sure what if anything will happen with it.. but, I tried..   My point is to voice your opinions on Cancer when you can.. make those in elected office aware.. they are not all knowledgeable on Cancer.. 

 

And here is what I wrote:

This is a very hot topic in many places around the world. How do you put a price on a human life..? That is the key question. Yes the drugs are very expensive, but, when it is YOU or your loved one.. well, there is no price. I recently lost a pal from Scotland as he had gone through the few allowed drugs there. Sad as only a few months after his death, another drug is now avialable. How do you explain that to his family..? I am very lucky, here is the U.S. we have a lot of options, more than in the IOM or the U.K. I am on my second drug, the first one was working great on the Cancer but was killing my Liver. The current drug is working on the Cancer and not hurting my Liver.. so for now I am very lucky. Please feel free to ask me any questions. I plan to be on the IOM next August, as usual..!
Ron

 

 

Just saying hello to fellow Inlyta users.  My husband has an MRI of his back on Wednesday to check for mets.  His last PET/CT scan in December was no evidence of metabolic disease.  Yeah!  We think Inlyta is working really well for him.  He is very tired, sometimes nauseated, no appetite, and sometimes has diarrhea.  He is not losing weight and other medications are taken to help with those symptoms.  How is everyone else doing? 

Nano:  How are you doing?  Did you get to 7 mg? 

Phoenix:  I went to the Pfizer website and one of the side effects listed is a cough.  So perhaps your cough is from this medicine.  How are you feeling now?

Finally, I want to mention that my husband is on medicare and has a supplemental prescription plan.  We still pay $1000 a month for this drug.  We are definitely grateful, without a doubt that this drug is working for us, but the price is really high.  Does anyone care to comment or provide some helpful information regarding paying for this medicine?  (No political commentary please).

Thank you.  Hope you are all doing well!

Annie

a_oaklee said:

how is everybody on Inlyta?

Just saying hello to fellow Inlyta users.  My husband has an MRI of his back on Wednesday to check for mets.  His last PET/CT scan in December was no evidence of metabolic disease.  Yeah!  We think Inlyta is working really well for him.  He is very tired, sometimes nauseated, no appetite, and sometimes has diarrhea.  He is not losing weight and other medications are taken to help with those symptoms.  How is everyone else doing? 

Nano:  How are you doing?  Did you get to 7 mg? 

Phoenix:  I went to the Pfizer website and one of the side effects listed is a cough.  So perhaps your cough is from this medicine.  How are you feeling now?

Finally, I want to mention that my husband is on medicare and has a supplemental prescription plan.  We still pay $1000 a month for this drug.  We are definitely grateful, without a doubt that this drug is working for us, but the price is really high.  Does anyone care to comment or provide some helpful information regarding paying for this medicine?  (No political commentary please).

Thank you.  Hope you are all doing well!

Annie

Hi Annie.  Thanks for asking.

Yes, I finally received the 7mg dosage upgrade.  But I only started on it this past Saturday. 

Of course there is no way of knowing if it is working to control those newly discovered small liver lesions (which is why I stopped taking Sutent) until we do a CT scan with contrast.  That is still about one month away.

I can report one annoying side effect. My voice is slightly hoarse.

In addition I have just started radiation treatments on the bone lesions in my left femur.  As such I am fighting a lot of pain in my left thigh due to the inflammation caused by these treatments.  "They" tell me not expect any relief before at least 5 sessions.  Later today I will go in for session number 4...

NanoSecond said:

Inlyta

Hi Annie.  Thanks for asking.

Yes, I finally received the 7mg dosage upgrade.  But I only started on it this past Saturday. 

Of course there is no way of knowing if it is working to control those newly discovered small liver lesions (which is why I stopped taking Sutent) until we do a CT scan with contrast.  That is still about one month away.

I can report one annoying side effect. My voice is slightly hoarse.

In addition I have just started radiation treatments on the bone lesions in my left femur.  As such I am fighting a lot of pain in my left thigh due to the inflammation caused by these treatments.  "They" tell me not expect any relief before at least 5 sessions.  Later today I will go in for session number 4...

 

Nano, sorry about the bone pain. I have been familiar with it. Pelvis, spine and ribs. Funny thing is that radiation was done to areas of my spine and ribs that weren't hurting. The ribs hurt the most when they were fracturing from the tumors. (not radiated) And the spine was done were the tumors were encroaching on the spinal cord. That could have been bad. My ilium hurt so much that I could only get around the house if I was taking percocets. I was thinking that I was approaching the end. The nivolumab took care of most of these. Now there are only a couple or few in my spine. But they are small. (so far). My doctor thinks that my remaining tumors are still going to shrink from the combo of nivolumab and IL-2. So no radiation is planned at this time. I am glad that the radiation is effective. The radiation oncologist told me that the radiation fatigue was going to hit me big time. It did some. But not a big deal. Mostly what I want to say is that it sure is nice not having the pain anymore. So good luck. And keep the faith.

GSRon said:

The plan

Just talked to the main doctor. I come back tomorrow and get a phlebotomy. But we will try and go to a two month schedule. My hermatocrit is still higher than we want. Still it is good news.

You guys continue to amaze and inspire...your attitude, commitment and determination is incredible.

TAKE NO PRISONERS!!!

Hi Everyone,

Thought I'd chime in on my new Inlyta experiences. I've moved up to 7mg -2x day after 23 days at 5 mg - 2x day. I was having no side effects at 5mg. BP was great, no GI issues. I felt as close to great as it gets these days. 

After 1 week, 7mg side effects are hoarseness, sometimes I have a little brain fog and more physical fatigue.  BP is still good.

Ron, my bilirubin was 2.1 after 23 days of 5mg. That's not too high for Gilbert's Syndrome. We will see how it does at 7 mg. I did have the fractionated bilirubin done and it showed .4 direct and 1.7 indirect. From what I understand, direct is "good" bilirubin and indirect is "bad" bilirubin. I'm still trying to understand this issue.

I'm still riding my bike. TW would be happy. He always gave me "atta-boys" for my exercise routine. Although a 30 mile ride now feels like a 60 or 80 miler used to feel. But I still enjoy the hell out of it and I'm not planning to stop anytime soon.

I have my next scan on February 27. We'll see how the lung mets and my bilirubin are doing then.

David