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Axitinib / Inlyta

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All..  OK, so I am creating a new topic for just those that have any info on Inlyta - Axitinib.  I began Votrient in March, 2013, and stopped it due to Liver issues in July, 2013.  I started the Inlyta on 9-5-13.  Here it is less than two days later and my B.P. this morning was 162 / 100.  I should say that I anticpated the B.P. rise and took a 5 MG Norvasc on top of my 50 MG Metorprolol.  Two hours later, I am only down to 157 / 94.  I will check it again about every two hours.  

For me, I get a headache with high B.P. and so far this is the only side effect, but I know it is too soon to really report on much.  More to follow..

Ron

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

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's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

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.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Neil..!  OK I take 5 mg twice a day.   And if you remember, I have pain in my left butt cheek...  it never got any worse, in fact some days I barely notice it.. Maybe some form of S.E..??  S.E.'s showed up a few day after I started with elevated B.P., then fatigue about a week in, then the diarrhea / constipation cycles.  The F&S may partically..?? be due to the P.V. so my experiences are likely all not relevant to anyone else.. dunno...

But it is very likely that my ackes and pains are all due to my past body abuse... and now that I am not as active my lack of muscle tone is making things a bit worse.   However since my recent scans were good, I am not concerned for now.  The positive results are well worth it all..!!

Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 163
Joined: Jul 2012

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's picture
GSRon
Posts: 1306
Joined: Jan 2013

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

 

 

a_oaklee
Posts: 176
Joined: Nov 2013

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

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Doing good overall here..!  I am now sort of retired...  Two Dr appoitnments tomorrow... (no Onc Dr).   Saddens me they will likely take a pint out of me and throw it away...  have a bite of lunch and then kick back the rest of the day..

 

Oh yes. just watched a great video.. but where is my favorite translator when I need her..??? Surprised

http://www.youtube.com/watch?v=AKNVj9U6ymY

 

Ron

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

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...

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Neil... hope that bone pain goes away fast..!   Yes the voice issue.. got that... people think I have a cold or flu...  But as we both know.. if it works, then no big deal..!  And I DO expect it ot work for you..!!

I get to visit the Vampire ladies today..!  

Later all...

Ron

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

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.

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Thanks so much Fox.  As you and anyone else who has ever experienced it knows, bone mets are notoriously painful. And for me at times the pain comes in sync with my heartbeart - which is the absolute worst.

My femur pain has been very frustrating for other reasons as well.  That is because while I was on Sutent (plus Xgeva) I not only had it totally under control but was actually growing new, healthy bone back in the afflicted areas.  I was only forced to stop Sutent because I developed lesions in my liver - but not because Sutent stopped working on any of my bone mets.  In fact it was still going strong on them.

The current problem only surfaced once I stopped taking Sutent and then had to wait one week before I could start on Inlyta.  Because about one week after starting on Inlyta that femur pain/flare up started.  And it soon became quite apparent that (for me) Inlyta at 5mg twice a day was just not going to be sufficient to control that bone met.

So my onc agree to quickly increase my dosage up to 7mg twice a day.  However, due a last minute and damn infuriating insurance requirement for "prior approval" I did not actually receive that higher dosage until a little over a week ago.  Once I finally started on the higher dosage all the pain started to subside.

What I also did not anticipate was that undergoing radiation treatments might inflame the lesions before finally killing them off once and for all.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Just had a blood test. And the results are great. I may not need to have a phlebotomy today. Life is good. The doctor thinks the Inlyta may be controlling my red blood cells. Be well all. Ron

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

you won't be getting a lobotomy. This cuckoo's nest would miss your personality. Keep doing well. Karma dude.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

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.

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

This is terrific news Ron.

It sounds like Inlyta may be offering some unexpected side benefits to you.

Keep up the great work.  :)

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

TAKE NO PRISONERS!!!

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Neil,

 

Are you doing your radiation therapy at the same time that you're taking your daily Inlyta dose?

 

Mom was just on everolimus but has stopped because of a new bone met. Our oncologist has referred us to see a radiation oncologist (who we are seeing on Thursday) and said to make an appointment when we're done with radiation. The next drug they want to try is Inlyta but there was no mention of anything to help with the new bone met. It seemed unsettling to me for mom to put her on hold from starting Inlyta for so long...it's been exactly a week now that mom her stopped taking everolimus so I believe the "wash out" period should be over. I was thinking this was maybe because she couldn't be on Inlyta and radiation at the same time but it seems as though you are on both. I hope the pain has been feeling better!

 

Virginia

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Hi Virginia.  Yes, I am still taking Inlyta - 7mg twice a day.  I am also in the middle of undergoing radiation treatments to bone lesions on my left femur.  As far as I can ascertain there should be no restrictions on your Mom trying Inlyta while also undergoing radiation treatments.  Of course there may some other medical issues with your mom that may be dictating otherwise.

There are a few additional things that I am doing to (hopefully) help the radiation treatments work more effeciently.  One is that I am taking the minimum dosage of Metformin.  There are several studies that show that Metformin can help whenever undergoining radiation treatement.  Another is that I follow a low carb/high fat diet.  Finally I make sure not to take any anti-oxidants while undergoing radiation.  This last item is a bit controversial - not everyone  concurs - but I feel there is enough evidence not tempt fate.

Today I will go in for my 5th treatment (of 12 total).  Unfortunately, the pain is still present.  However I was told not to expect any relief until I had undergone at least 5 or 6 of these treatments.

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

Hi Neil,

 

What type of radiation are you on right now?

After our appointment with the radiation oncologist tomorrow, I'm going to call our oncologist's office to make an appointment to see if we can start mom on her Inlyta at the same time. From what I've been reading, I don't see a reason why she wouldn't be able to do both. Our oncologist will be away for a few weeks and our next appointment with him isn't until March 11th, which I think is ridiculous! 

My mom is actually on Metformin XL 500mg twice a day. She started taking this because her blood sugars were high whilst on Everolimus. Since she has stopped taking everolimus, her blood sugars have come down significantly and they want her to remain on the same dose. I've read a lot about your posts on Metformin here on CSN and on SP and I'm very happy that mom is taking Metformin!

I hope all goes well today and that you start to feel some relief after this 5th treatment.

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

I am getting some sort of IMRT.  Each dose is about 3.6 Gy and I will have 11 of them in total.  This dosage is higher than "traditional" 2 Gy radiation treatment but less than SBRT's 5 Gy (and will take twice as many days).

I just got back from my 5th treatment and I am happy to report that the pain does seem to be very slowly dissappating.  I do hope it keeps up...

While I was there I met with my radiation oncologist and asked whether there was any necessity to suspend taking Inlyta during these kinds of treatments.  She told me she could not come up with any reason.

I think that your Mom already being on Metformin is terrific.  After all the recent research that I have read I really don't know what to make of those therapies that may work to raise blood glucose as a side effect.  This is one big reason that I try to avoid all steroids if it is possible - as well as any statins.  Regardless, it sounds like your Mom's oncologist was very forward thinking by putting her on Metformin to help her deal with this issue while she was taking Everolimus.

angec's picture
angec
Posts: 664
Joined: Mar 2012

Hi Ron, sorry to hear about all you have been through!  Looks like the higher dose is going to do the trick for you. Hopefully your strict food intake and close watch will help keep the side affects at bay. I was wondering if they would decide to treat with both meds, Sutent and Inlyta, as I have heard others were on both, with one week on one and one week on the other. Have you heard about that?

Why is it that you avoid steroids? They want to put mom on it, it seems the Votrient caused pulmonary Fibrosis.  She is doing ok now but in April they want to start her on that.  I have her using some homeopathics for that and it is doing well for her.  I rather her not go the steroid route if she doesn't need it!

Hope all goes well for you and the pain is totally gone once the treatments are done!  :)

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

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

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi David... I guess the good news on my blood issues did not spill over in to my Kidney issues..  My Creatinine went up to 2.0 which is not terrible as we both know..  But my eGFR dropped to 36.  And my Urea Nitrogen went up to 33.  I wonder how close I am to being dangerous..??

Ron

GSRon's picture
GSRon
Posts: 1306
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This is too good not to share... my Irish pal Cargo had a hand in this...love that guy..  https://www.facebook.com/lookback/

Ron

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Ron,

Sorry about your kidney issues. I know enough about these readings to be dangerous, so I'll just say I hope things improve soon. Thinking about you, Neil and others as we work through our Inlyta journey.

David

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All..!!  OK, sometimes you just have to do the right things.  A year ago, I made two important changes, so to speak.  I got myself to a Pulmonary Dr who sent me to a Cardio Doc.   First off the Pulmonary guy has been a biker.. but he got me in to a sleep study which proved I had bad Sleep Apnea.  This got me a CPAP machine.  Now some folks have trouble adapting to wearing a mask at night.  Not me.. I made up my mind that I needed it to live.

My Cardio Doc did an Echo Gram and told me my heart was enlarged.. but that she felt the CPAP may help all that.

Of course both Doctors were correct.  The CPAP gave me great restful nights.  I no longer get up in the middle of the night to pee.  And now that I am on Inlyta, well.. no way could I function very well without the CPAP.  This year's Echo Gram showed my heart was on it's way towards a normal size, and that the heart muscle was much stronger.  Yesterday I had my one year follow up with the Pulmonary Doc and he too was pleased at my progress.  FYI, in case you do not know, the CPAP machine has a memory chip inside.. he KNEW how much I used my machine.

So pals, do the rights stuff, and sometimes you get some shining stars in the midst of this Cancer crap.  It all can add more GOOD time to our life clock.

Be Well All..!!

Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 163
Joined: Jul 2012

I continued Inlyta at 3 mg/2xDay and it did absolutely nothing for me. The cancer basically exploded.  That's the best way I can describe it. New mets in abdominal wall, new mets in subclavical lymph nodes, increased several tumor sizes in lung. Next up-- sutent + gemcitibine trial.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Geesh Phoenix.. sorry to hear that... but hopefully the Sutent + trial does the trick.. and hope if also eliminates the nagging cough...  Keep us posted, and good luck...

Ron

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Hey Phoenix,

I'm sorry about the Inlyta news. I hope the Sutent trial is a winner. Thinking about you, I know how that kind of news hurts.

Take care, David

sewmommy's picture
sewmommy
Posts: 14
Joined: Jan 2014

hey ron... i just signed the concent papers yesterday to start the three year axitinib trial... woohoo.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Sew... hope it works great for you..!!  Keep us posted please...

Ron

sewmommy's picture
sewmommy
Posts: 14
Joined: Jan 2014

will do! im almost hoping my bp goes up, just to tell me im getting the drug and not placebo... are you in a blind trial?

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Sew, I don't know what trial you are on. Inlyta is an approved drug

sewmommy's picture
sewmommy
Posts: 14
Joined: Jan 2014

sorry Ron.. i forgot that we were in different stages! im going to be in a 3yr blind adjuvant trial with it.. seeing if it will prevent mets if started within 12wks of 'curative' surgery

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi Sewmommy...  ouch..  so far, from what I hear, all the adjuvent therapies have failed..  I wonder why they keep doing these..?  Some of us feel that is a waste of a good drug... Maybe it will work for you, but then how would anyone know..?

Ron

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

I think they are buying time with these drugs until the good stuff becomes available.

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Best of luck, I hope you kick some ass.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi All..!

Well, while (somewhat) cleaning up yesterday, I found the CD of my last July scans.  I do not recommend you all look at your scans.. I can tell you it was a bit depressing.. Now it took me a while to remember how to navigate, it is a bit difficult.  There were two main scans, one had over 800 images and one 600.  Once I got the exact right image pulled up, I went "Oh Shi..!"  The cyst on my remaining Kidney is darn big..!  And there were a lot of spots in both lungs.  Now here is the hard part, deciphering Mets from other stuff.. And I may of got it all wrong, me with no training.  And as I get no contrast with my scans, I can see why they want the contrast if possible.  But my point is that everything shows up.  Yes I could be way wrong, but I think the issue is picking out Mets from normal stuff...  If so, then no worry at all.. just need to compare from scan to scan.  If those spots are growing, well.. no need for any further Dx.  Oh yes, and there is this nice "ruler" tool so the actual size can be measured.  However, each one of the 800 scans has a slightly different angle, which is why the measurement is not a 100% exact science.  I think this is also why when small size changes are noted, they get put in the "maybe" category as the numbers may not be accurate.  I need to get a copy of my January scans so I can compare.   But this also stresses the importance of using the same place each time to get our scans done, for consistency.

Be Well All...

Ron - headed to my one motorcycle pal's funeral.. booo....

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

This is the first scan since I started Inlyta but it includes a 26 day span without any meds while I moved off of Votrient and waited for insurance approval for Inlyta. So, that makes 3 months since the last scan and roughly 2 months on Inlyta.

1. Bilirubin is 1.5, that's GREAT for me! ALT and AST are also great! My liver and Gilbert's Syndrome seem to like Inlyta.
2. Abdomen and pelvis scan still remains clear of mets.
3. Lung mets are mixed. They follow 3 mets as markers, there are many more smaller ones but here are the 3 markers:
    A. 9mm x 6mm - is now 9 x 8mm
    B. 1.4 cm x 1.2 cm - is now 1.2 cm x 1.0 cm - this one was ACTIVELY growing in the fall
    C. 1.1 cm x 8mm - is now 1.2 X 1.2 cm
Those are in the 20% margin of error status, so he considers it stability especially with a month without meds.

Echocardiogram was good!

We are raising the meds from 7mg 2x per day to 10 mg 2x per day (max dose for Inlyta). We'll see what side effects that brings. I'm not having any side effects except fatigue now, so we will see. I'm super happy that my liver is tolerating Inlyta.

I feel better than I have felt since IL2, we'll see how things go with the dosage increase...Celebratory long bike ride today!

David

 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi David, I think your results are very good. Especially when you consider that the one month of no drugs allowed your Mets to grow and you have only been on Inlyta for two months. I have a hunch your next scans show shrinkage. And your liver is happy as well. huzzah.. Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 163
Joined: Jul 2012

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.

a_oaklee
Posts: 176
Joined: Nov 2013

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.

 

 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

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...

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Good luck tomorrow Neil, sending good vibes your way!

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Many thanks Gary and Fox.  Greatly appreciated.

a_oaklee
Posts: 176
Joined: Nov 2013

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

 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

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's picture
DMike
Posts: 241
Joined: Nov 2011

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

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

Good luck Nano! You're due!

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