CSN Login
Members Online: 14

Axitinib / Inlyta

GSRon's picture
GSRon
Posts: 1124
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

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi All..!!  I almost started a new posting.. not sure if I should or not.. but if request it is easy enough to do..!  I think I now have the answer to my blood thickness issue along with a couple of old concerns I had...  I think I have..  Polycythemia vera  See http://en.wikipedia.org/wiki/Polycythemia_vera  for more info about it. 

I had several concerns at time of surgery last March, 2012, that never got answered.  I had.. enlarged Liver and Spleen.  I have that skin peel on my hands, feet, and those in between regions.  I also have red hands most of the time.  And most recently the high blood pressure caused by excessive red bloow cells, high Hematocrit and Hemoglobin.  All the above are syptoms of Polycythemia vera.  Plus my parents are of European descent which increased the odds a bit.   So I just e-mailed my Dr about it all..  The main treatment is exactly what was perscribed.. remove 500 CC's of blood regularly which for me is twice a week.

So whre did I get the lead..??  Well tonight at Shop Nite (a regular Wednesday night event)..  The sweetie of a pal of mine who just happens to be one smart nurse figured it out..  Darn fast too..!!  I owe her a bottle of wine... wonder what her favorite is..? 

Ron

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Ron, my father in law had that. He had blood removed every week or so for a while. He did well.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Yes, I did a lot of reading... should be OK.. just a bit concerned about having my veins all messed up.. but it will be OK..  However the latest issue is my job..  It was not an issue taking a bit of time every 90 days, but twice a week has become an issue..  This may force me out... Now that may also be OK, just a new frontier for me.. we will see..

But, this kind of makes all my info on side effects on Inlyta invalid to some degree..  Just hope it is working... we will see in about 2 months...

Ron

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Hi Ron;

I too, have been on the Inlyta, starting in March of this year. My initial tablets, (like you) were (2) 5mg. tablets daily, but after 3 1/2 weeks, I found myself in the E.R. with what was initially thought to be a heart attack, (flush skin, sweating, and unable to catch my breath). 2 hours later, the E.R staff was unable to give me a difinitive answer, as to why this had happened. MY GP Doc and Oncologist conferred and mutually agreed that I should discontinue the Inlyta for an undetermined length of time and "see what happens". 2 month's later all my internal systems had returned to normal, so we resumed the Inlyta albeit, only a single 5mg. tablet daily. Yesterday, 10/11/2013, I had labs/CT/and bone scan, and on Monday 10/14/2013 will get the news on mets activity. I am encouraged, because after the first go round of just 3 weeks plus, the CT's showed significant shrinkage, and now I've been on the stuff for 4 month's straight. For me, my BP has been well managed well by using Tribenzor 20-12.5, and a thyroid med called Levothyroxin 25mcg. I have minimal side effects and quality of life remains good. 

Best of luck to you. Gary

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Gary,

Finally some good news. I am thrilled. And I hope 10/14 will prove you're metless. 10/14 marks John's two year anniversary since his RCC diagnosis. So I'm keeping fingers crossed we're celebrating his anniversary plus good news from you. Please keep us posted.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

 

Tool Guy.. yes good news..!  Hope it continues to go well for you..  Alice I love your term..  "Metless"..  You should trade mark that one..!! :)

Ron

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

OK, so I am learning new words.. I am to get a new blood test, Erythropoietin or EPO fpr short.  This is a protein that tells my body to make more red blood cells.  It could be that I am making too much of this EPO and that is the cause of my latest issue.

>>>Normal serum concentrations of erythropoietin for 95% of individuals with normal hematocrits range from 4-27 mU/mL. 

As the hematocrit is lowered by iron deficiency, aplastic or hemolytic anemia, the concentration of erythropoietin increases as shown in the graph below. In the absence of anemia, elevated concentrations are seen in renal tumors, as a manifestation of renal transplant rejection, and in secondary polycythemia. Low values may be observed in hemochromatosis.<<<

More fun today.. .another 1/2 liter to be drawn..wonder who is doing the deed today..??  We will see...

Oh and the cause of this latest issue can be either my Liver or my one Kidney..or..??

Be Well All..!!

Ron

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

10/14/2013 Follow up to labs/CT/Bone Scan;

So the basics are posted on my entry above. The first go-round of the Inlyta (3weeks or 23 days), showed 1-3% met reduction in size, (even though the scan results are read in cm's of initial dia vs reduction in dia). This scan showed all but 1 met had reduced an average of 8-15% in size. The one met that is resisting the drug, has not changed (larger or smaller) since beginning the drug. Don't know why. So now that the cough has been managed, I'm going back to the once daily 5mg. Inlyta tablets. It's odd to me, (the results, that is), because initially, the Onc. had told me that this particular drug was supposed to hold all mets at their current size, and not allow further growth. I'm not complaining for sure, just pleased at the results!

Stay tuned folks. Gary

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Gary glad you are doing better. I have some good news.. My blood is not as bad as it was. So they are going to take a half liter of blood in a few minutes, but it looks like only once a week now. Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Hey Kids,

I guess I am the newest member of the Inlyta Club.  Here's hoping it doesn't suck.

Background- Stage 4 Papillary RCC, 2009; Rad neph, IVC thrombectomy, lymph resection 2009.  Remove single lung met 2011. New lungs mets popping up here and there.   IL2 2012- failure (Boooo!), Votrient 2012-2013(Boooo! Hisssss!)  LY2875358 5 infusions (Booooo!)

So the next deal is Inlyta, just got off the phone with the specialty pharmacy.  1 mg tabs, 3 tabs, 2x daily-- so 6 mg daily.  Will be trying some facets of Nanosecond's diet and supplements along with it.  I'm not into side effects-- I have golfing and skiing and rollerskating and dancing and stuff to do.Cool

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

P.R. Inlyta is not too bad.. in some ways easier than Votrient for me... only big negative is the Foot and Hand stuff...  but if you read above.. the only bad part is in between... major skin peel..

But if this stuff works.. it is worth it..!!!!

Good Luck..!!

Ron Cool

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

GSRon, I thought the skin peel was part of the polyaloe vera problem.  Gee-willikers..... not looking forward to that.  Maybe I won't get it?  Many people complained of major skin peel with IL-2, but I don't recall that side effect.  Even so, I'm prepared to manage this monkey on my back.

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

Phoenix,

Now that's the attitude we love around here, but don't forget pizza and beer ala fox!  ROCK ON!!!

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Pizza- check!

Beer- check!

 

Thanks!

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Ok, just had another phlebotomy. Last one for a while. My blood numbers are now in range. Time to go home and start my weekend. Be well all. Ron

a.oakley
Posts: 32
Joined: Oct 2012

FYI.  My husband started on 5 mg of Inlyta twice a day in April.  The scans in June showed no new sites and no growth.  We are dealing with bone mets.  His dose was increased to 7mg twice a day.  The goal is to get to 10 mg.  The scan in late September showed no evidence of metabolic activity!!!!  We asked "is it gone?".  They said "it shows no evidence of metabolic activity".  We said "did the cancer die?", and they said "it shows no evidence of metabolic activity".  No matter how we phrased it, we got the same answer.  There were no areas that "lit up" on the CT/PET scan.  We sat there in shock with this good news.  Kind of like PTSD.  We were numb.  So much bad news and finally something good.  He remains on 7mg.  We chose to not increase to 10 mg.  The side effects that he experienced were extreme exhaustion which was remedied with starting Ritalin.  He takes one pill each day and it truly helps him be awake and enjoy life and take care of the things he wants to do.  He also had diarrhea for about a week, which was treated with OTC Imodium.  Our next scans are in December.

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

I am still at 3 mg of Inlyta 2xday, and the oncologist is not ready to move me to a higher dose yet.  So far, no side effects at this low dose except occasional runs to the restroom.  I haven't taken anything to curb it yet because it comes and goes.  I have even begun to feel better ==> I have a pain in my chest that of course, I swear is cancer pain, like ALL pain, and it is starting to subside. I had been doing some hacking at a few golf balls, so the doctor was not concerned about my pain and told me to take some Tylenol.  To me, the pain is not debilitating enough for drugs, so I haven't taken anything for it.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Phoenix.. thanks for your report.. I too have some slight intermittent diarrhea...  also some slight constipation.. so it kind of evens out..  I too take nothing to change the bathroom routine..

Ron

toolman1's picture
toolman1
Posts: 44
Joined: Jul 2012

Hi Ron;

I too have been on Inlya most of this year. I had issues @ 10mg. daily, so my Onc. cut the dosage to 5mg. daily and I still have issues. 

BP, was thru the roof @ 10mg. but @ 5mg. I am taking 20-12.5 mg. of Benicar HCT. Like yourself, I also get headaches when the BP gets elevated, and dizzy, when it gets too low. Also, you haven't mentioned any issues with your Thyroid, which I am taking 50mcg. of Levothyroxin for daily, to help with dizziness. I too had extreme muscle soreness everywhere, and was very short of breath, so much so, the GP doc. thought I was having a heart attack. An ER visit, and Ultrasound proved otherwise. Unlike you, I have had no issues with skin peel, hair color change, or anything else. Just the diarrea, which comes and goes. I've had 15-25% reduction in met sizes while on the Inlyta, but this week, was told by the Onc. that if the health issues persist, he will entertain the idea of changing to something else. So it's gonna be a wait and see thing i guess. Best of luck to you on this stuff, and I will be watching you're progress. Gary

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

No thyroid issues.. I have plenty of issues as it is..!  So, for now my Polycythemia is in control.. 10 Phlebotomies whew.!  Hope I now go in to a maintenance mode.. that would be welcome.

I have about 3 weeks until my next set of scans, then I will know how the Inlyta is doing.. I expect great scans..!

Be Well All..!!

Ron

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Body aches (muscle and joint aches and stiffness) are starting to kick in. At first, I thought it might be the years of running, dance class, and skiing combined with the cold weather settling in, but I missed a dose and the aching subsided that day.  When I got back to the dosing schedule, the aches came back the next day. I'm not taking anything for the pain.  It is debilitating when I get up in the morning, but a hot shower loosens things up and I am okay throughout the day.  

 

I have a dry cough that sometimes gets so bad it causes me to be short of breath, but I found that humidity cures it quickly.  I now sleep with a humidifier in the room, and I am getting one for the office. Yesterday I tried a homeopathic remedy for the cough and it worked. 

 

I have been going to a health spa weekly to use the rock salt and activated charcoal saunas, steam room, and jetted pools for 6-8 hours, and I feel like a million bucks when I leave.  My goal is to get weekly body massages when I go. 

 

My BP is 107/70.  I am vegetarian (except salmon), I juice daily, eat no processed foods, no sugar, no refined oils, take flax oil mixed with cottage cheese daily, as well as Ubiquinol, Resveratrol, whey protein, Cal-Mag-Citrate, Psyllium husk, and Vitamin D; and Melatonin at night. I have taken various supplements off and on over the years, but I can actually stick to these because I feel the difference.  I sleep like a baby and I am very refreshed in the morning, despite the body aches.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi All..!! I hope everyone is doing well..  Not much new to report here.. but next week at this time I wiill have had my Onc visit and know the results of the scans...  I will let you all know then...

Ron

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Fun Afternoon... Yes the fun has begun.  Did my follow up with my Cardio Dr..  She gave me such a look when I told her about my PV. Plycymethia Vera...  Then she said no way...  then I told her my test results... she said "****"..! I kind of laughed.. then told her about the 10 Phlebotomies.. she shook her head..  OK.. so no other note worthy news..  Tomorrow is scan day... closer to knowing what is happening inside me...  No stress here...yet anyway...  

OK you all can say I am a sikko.. finding it funny making a Dr lose it like that...  Cool..!!

Be Well All..!!

Ron

Srashedb
Posts: 155
Joined: Dec 2013

sending you good wishes on your scans.

sarah

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Well time to celebrate a bit. Shrinkage is the word for today. But my P.V. Is a concern

Jojo61's picture
Jojo61
Posts: 349
Joined: Oct 2013

...in this case of course! Wink So we can celebrate! (I am always good with that!)
Now...I am really not good at the technical end of health....that is where I lean on the savvy members here. So can you explain a bit about the PV concern? Is there a plan of action? Does this mean no more cute nurses drawing your blood?

 

Hugs,

Jojo

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Sorry for the short message, I hate trying to type on my cell phone.  And more fun, my home computer has a virus, and it won't let me change my password..  So now I am using my work puter to give you all a proper update.

Major shrinkage.. from 2 MM up to just over 1 CM..!  And there used to be a Met in my left Kidney "bed", the Votrient made it disappear. And it is still MIA..!  Plus my Liver is very happy on the Inlyta, so all that is great news..!!

But the P.V. (Polycythemia Vera) is my Doctor's and my big concern.  I may have some heart - artery damage due to trying to pump that thick blood through my body.  The outward signs are tingly left fingers, the huge skin peel, and the red and blue fingers on both sides, oh yes and small headaches.  Inside my heart is enlarged along with the one artery, which is the big concern. I will ask to move up myheart echo gram to an ASAP.  The RCC won't matter if I pop a cork...

My Hemotologist did a lot of tests on the extra blood I gave.. and we ruled out any connection to the Chemo drugs or the RCC.  This is totally a separate issue.  And so far no reason why I have such a bad case, compared to how the P.V. is usually found to be.  So yes I had another Plebotomy after my Onc appointment today.  Sadly no pretty nurse, I got the "guy" nurse.  I tried to get a swap, but no success.  You ladies here would of liked to have Terry poke you, I mean needle you, I mean hold your arm.. heh..   Actually Terry did pretty good.. go the deed done..  Looks like more Phlebotomies in my future.   I should also say, even though they use a pretty large needle, I am getting used to it.. not so bad...  I now have 3 doctors telling me I need to take the Amlodopine daily...  Time for me to listen.

JoJo, thanks for the hugs.. I really enjoy them..!!  :)

 

Ron

Jojo61's picture
Jojo61
Posts: 349
Joined: Oct 2013

Thank you for the explanation in layman's terms! You have a lot on your plate, Mr. Ron. But you are a fighting man and I like your style! I hope you have lots of pretty nurses to help ease the way!

But please take you Amiodopine daily!!

Big Hugs,

Jojo

DMike's picture
DMike
Posts: 236
Joined: Nov 2011

Hi Ron,

That's great news on the success with the Inlyta. As you know, I'm particularly interested in how your liver is reacting to Inlyta. Super happy to see your liver numbers are good.

I wish you luck with the P.V. Like you said, getting that figured out is super important!

I saw my oncologist yesterday and after 2 weeks off of Votrient, my bilirubin is back down to 1.6, that's pretty much my norm, so we start Inlyta next week. I hope my liver behaves too!

David

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi David.. I expect that you will have similar good results. My Bilirubin actually went down since my last test. So guess what.. My cousin has Gilbert,s as well. Found that out today. Keep us posted. Ron

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Gilbert's - OK so an interesting thing... I talked to my one Cousin this morning... he tells me about his "normally" high Bilirubin.  I tell him he has Gilbert's.  He said his doctor never gave it a name.. right.   So I did a quick search and found that Gilbert's is found in families..  So, I spread this info for others in the family to be aware of.  The good news is that Gilbert's normally does not cause any health issues.. but for people like me that take Chemo drugs, well.. it can make a difference..  http://www.nlm.nih.gov/medlineplus/ency/article/000301.htm

Be Well All..!!

Ron

DMike's picture
DMike
Posts: 236
Joined: Nov 2011

I was explaining Gilbert's to my brother last week and he said bilirubin is the one thing that's always high on his blood work. I told him well, it looks like you have Gilbert's Syndrome too!

David

 

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi David..  Yes, not surprizing about y our Brother.. and I would not be surprized if Gilbert's is common to more of our family tree.  Luckily, Gilbert's is usually not a health issue..  I have suggested this to more of my family members... some are going to ask their Doctor about it..

Ron

Mikeyswife
Posts: 31
Joined: Mar 2013

Well the Sutent ride has come to an end.  After 8 months Mike's tumors have progressed.  We knew it was coming just by the new cough, hip pain, exhaustion, and night sweats.

Dr. Rini has offered him a place in an Axitnib/Dalantercept trial.  Very excited about getting a combination drug trial. He will be on part 1 which is a dose-escalation study so he will definitely get both drugs. Part 2 is randomized.  Seems like a no-brainer to join the trial when Axitinib would be his next option anyway.

Is anyone else familiar with or on this trial?

 

 

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

It sounds very promising.  Are you sure it is a Phase I trial?:

http://www.acceleronpharma.com/2013/02/acceleron-initiates-phase-2-study-of-dalantercept-ace-041-to-treat-patients-with-metastatic-renal-cell-carcinoma/

Mikeyswife
Posts: 31
Joined: Mar 2013

No, it is the Phase 2 trial you have referenced.  He wil be on Part 1 of this trial.  I actually first heard of Dalantercept from BDS' post of What's Coming Down the Pike.  It is so nice to have the information that you and others post on this site.  Dr. Rini was quite surprised that I had actually heard of this drug.  Thanks to everyone who contributes to this site!  I will keep everyone informed on how things go.  I am very excited because it is a combination drug trial.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Ah.. 2 AM here.. and ya gotta love that Inlya..  sitting here on the throne.. I know TMI.. but three days of diarrhea, then one day of constipation and back to the diarrhea again.  No, I am not complaining.. just letting those new to Inlyta know what may happen.  

So, besides all the crap.. (pun intended) I am working on my race bike.  Time has a way of getting away from me, and soon the race season will be here.  Oh, and last week I told my boss that he will soon need to replace me.  Just can't work with all that is going on with me.. time to pass the torch on to someone else...

OK, back to bed now..!

Cheers..!!

Ron Cool

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

Hi Ron,

I am very sorry to hear this, but thank you for the heads up.  I will be starting on Inlyta in one week... First I have to go through a Sutent "wash-out"  period.

Is that constipation due to your taking Immodium?

 

-N

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Hi Neil...  no Immodium here..  the "runs" usually last from 1 to 3 days.. the constipation only lasts 1 to 2 days.  It is not bad, when I consider the alternative..  besides Inlyta is "Liver" friendly for me.. so no complaints..  I just need to be near a porcelin receptacle...  I should also say it is not as bad as when I was on the Votrient (diarrhea that is).  So every few days, things change... kind of livens things up a bit..!! (Am I a sikko or what..?? ).

Just think of shringage... and all is good with the world..!!

Cheers..!!

Ron :)

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

OK, before the year ends, I should tell you something I just did... I re-ordered all my pills.  Yes about 2 weeks early, but I do not know what happens next year with my insurance and my co-pay on drugs.  So, I just got delivery of another month's supply.  I doubt my co-pay  will go down after the 1ST.

Ron

a_oaklee
Posts: 137
Joined: Nov 2013

My husband had his scans done in December and they came back negative again.  "No metabolic activity seen".  He has been on Inlyta for about 9 months.  We are really pleased with this report, but my husband actually asked the doctor if he could take a break for a week, or cut back on his dosage to 5 mg.  The answer to the request was that he could if he wants to, but it is not advised.  My husband says he is tired of being tired, and he also feels queasy, nauseated, with not much of an appetite.  These symptoms mostly started when he went to the 7 mg dosage.

a_oaklee
Posts: 137
Joined: Nov 2013

Nano.  I thought you were on Sutent for quite awhile.  We haven't been on that drug yet, but the length of time I have observed people having success on it seems promising.  I've read where people do two weeks on and two weeks off.  Or something like that.  This is why my husband asked if he could be off of inlyta for a week.  We thought if that worked for Sutent patients maybe it would be okay for Inlyta patients.  If Sutent is not working adequately when a patient is taking weeks off, is the patient instructed to take it continuously?  How long does it take to have a "washout" period?  Re Inlyta and diarrhea...my husband had that problem too, but he changed his diet to have less fruits and vegetables.  It really helped.  He does take Imodium occasionally.  A symptom specialist physician suggested trying Metamucil crackers...and that was a huge mistake. 

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

Yes, I was on Sutent until 2 days ago.  Right now I am in a washout period of 5-7 days before I will start on Inlyta at 5mg (and then slowly titrate up).

About 2 weeks or so ago I went in for my routine full body nuclear bone scan followed by a CT-scan with contrast of my Chest/Abdomen/Pelvis.

The results were a bit unexpected because they came back mixed.  The bone scan showed that Sutent was still holding all of my bone lesions safely in check.  As in my previous scans all of my bone lesions (in 3 different areas) showed only stability or shrinkage.  This part was expected by me because I would have felt a lot of pain immediately if they were not in check.  Unfortunately, for the first time, the CT scans revealed small lesions in my liver.  It also showed a few slightly enlarged lymph nodes near the liver and some very slight growth in a soft tisse mass that is growing out of my bone lesion at my sacrum (this mass was not new but the slight growth was).

So the bottom line is that I have developed resistance to Sutent after being on it for about 14 months.  In a case like this the recommended second line therapy is Inlyta - since I had responded so well to Sutent (beating the PFS by several months).  I also investigated joining a clinical trial for one of the immune therapy drugs (anti-PD1 or anti-PDL1, or a vaccine etc.) but did not find anything suitable or that met my criteria.

Right now I am halfway through SBRT (Stereotactic Beam Radiation Therapy) to kill that soft tissue mass at my sacrum.  This consists of 12 sessions - one each working day - that last about 15 minutes.  It is painless and there have been no side effects (and none are expected).  I will complete this one week from Tuesday.

I still feel terrific and had no significant side effects while on Sutent although my WBC (white blood count) did start to slowly drop during the last few months.  For that reason my onc and I decided to reduce my Sutent dosage slightly (50mg/37.5mg every other day with no breaks) and perhaps that may have allowed these liver mets to develop.  Who can say?  I still find it very bizarre that Sutent seems to work just fine on all of my bone mets and yet I have experienced progression elsewhere.

a_oaklee
Posts: 137
Joined: Nov 2013

I think it's great that the sutent worked for you for so long.  Inlyta has been good for my husband, and I hope that it works well for you too.  I'm sorry to hear about the small lesions in your liver.  Hopefully they will be zapped by the Inlyta very quickly.  How soon will you get scans following a new medication?  For my husband it has been 8 to 12 weeks.  Personally, I wonder whether 8 weeks is enough time to judge whether or not a medicine works. 

I agree with your opinion that it is bizarre that a medication can work for one area of RCC and not for another area.  While my husbands bone mets were responding, the primary kidney tumor was growing.  And I believe that the amount of tumor load would have an effect on the ability for the medicine to work.  That's just my common sense way of looking at it.  I am beginning to believe that combined medications is the way to go.

My husband has had cyberknife to his spine twice (different sites) without any sideeffects post-procedure.  He had SBRT on two separate occasions, two different areas, shoulder and hip.  No side effects either except feeling incredibly tired.  He was in quite a bit of pain before the radiation, and the pain to those areas is now gone.  The sites show no growth, no metabolism. 

Take care Nano.  I hope you continue to feel terrific! 

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

Thank you for your kind thoughts.  The thing is, bone mets have very little vascularization which is why TKI's like Sutent are not usually very effective against them - unless or until combined with either Xgeva or Zometa.  That is why I find it so bizarre that Sutent still was working to keep my bone mets in check all the while those little liver buggers were starting to grow.  And now I find it doubly interesting that your husband has had a very similar experience.

I guess I should add some additional information.  I fully agree with you that the ultimate "solution" is going to be some sort of combination therapy.  I happen to believe that the combination is going to be between one of several new immune therapies such as anti-PD1 (i.e. Nivolumab) or anti-PDL1, etc. - plus some sort of (as yet to be introduced) metabolic interference agent.  Metabolic therapies are new agents that can interfere with tumor cells ability to get sufficient energy to grow and rapidly divide.  In the case where they are not rapidly dividing (which is typical for most RCC) these therapies can force dysfunctional cells to commit suicide (a process called apoptosis).

One such agent is actually already available and is now being extensively investigated against multiple cancers: Metformin. This is the most common drug given to Type II Diabetic patients.  It helps control blood glucose - which remains one of the key nutrients that most tumors must consume in excess in order to survive and/or proliferate. 

As such, in addition to my starting on Inlyta I also convinced my oncologist to let me start taking Metformin - even though I am not diabetic.  In fact I am just the opposite since I have been following a low carb diet for several months now. I learned about this particular "trick" from Dr. James Watson, co-discoverer of the structure of DNA.  He is now about 85 years old and trying to delay the onset of his prostate cancer.  He is also personally convinced that the ultimate solution is going to come via some sort of metabolic interference.  Another researcher who also agrees with this is Dr. Craig Thompson, CEO/President of Memorial Sloan Kettering Cancer Center.  In any case, these are the kinds of leading-edge researchers and "out of the box" thinkers that I now try to pay close attention to. 

My very best wishes to all in this New Year.

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Well, here I go, totally off topic...  I had an amazing night tonight.. met up with my one Cousin that I had not seen in over 40 years...!!  Oh and her 3rd husband.  He and I hit it off...  lots of common interest... midnight came real fast..!!

But then here I am.. go to my Hotel room and read my e-mail.  Another Cousin back in Michigan.. her sister (my Cousin, duh) and her sister in law both have Cancer.. boooo...  the one has Cervical - Squamous Cell with lots of Mets.. geeesh...  Only thing I know to do is research... and send links to the latest treatments and clinical trials.

Be Well All.. and keep up the good fight..!!

Ron

GSRon's picture
GSRon
Posts: 1124
Joined: Jan 2013

Just an update here..  I think you all should know where my "head" is at..   First at DX I thought the worst..  but since my Dec 2013 Dr visits I feel very powerful, mentally.  Yes stage 4, booo..!!  But the Votrient worked but was not Liver friendly.  Now Inlyta is working and so far is Liver friendly..!  Having had 2 succesful drugs has given me the profound idea that any - all treatments are likely to work for me.  Maybe that is over optimistic, but that is how I think and feel.  And even before, I looked forward to my last scans, as I was sure Inlyta was working.  Does postive thinking help..?  Dunno, but I feel mentally better every day..!  There are as many good things that can happed to us as bad...  and I have always said my cup is not half full, but over flowing..

So, I have already made sure I have accomodations for next August on the Isle of Man..!  My Hostess EXPECTS me to be there...  She will greet me with a cocktail in hand for me.. a hug, and a big smile..  I should also say that in the last two years, when I got off the Ferry boat and on to the Isle ground, I bent down and kissed it..!  There is also a special spot on the Island.. no wait there are many special spots.. but the one in particular is at the Fairy Bridge. People go there and pay respect to the little ones...  I also have gone there and wished everyone well...  It is a tearful side trip..  Anyway, I have not yet made my airline reservations, as the costs are high right now... the fares go down closer to travel time... still expensive but not much concern... I am going..!!

I better get the race bike sorted.. lots to do and the bike ships out in June.  Time flies when you are having fun..!!

Be Well All..!!!

Ron Smile

a_oaklee
Posts: 137
Joined: Nov 2013

To my fellow Inlyta users:  My husband decided he felt so lousy he wanted to take a week off of the Inlyta to see if he could just have one week of relief.  The doctor advised against it but said the decision is yours.  Tough decision.  He stopped taking 7 mg and switched to 5 mg.  Has been doing that for one week, and indeed does feel better.  When he told the doctor what he did, he was told to take 6 mg instead.  So, I guess we will see how that goes when he has scans in 3 months. 

Don't all of you think it's interesting that a prescribed 7 mg prescription is composed of 1 5 mg pill and 2 1 mg pills, and that it is two separate prescriptions, two prices.  We have never encountered that before. 

Nano:  Thank you so much for providing additional interesting information.  I have been doing research on Metformin since you mentioned it.  Is it necessary for you to monitor your blood sugar?  I also think it's great that you have a doctor willing to work with you and consider your ideas for your own care. 

NanoSecond's picture
NanoSecond
Posts: 504
Joined: Oct 2012

I am very pleased to hear you that picked up on the Metformin tip.

Since I am following a low carb diet my oncologist wanted to make sure that I don't go hypoglycemic (even though I am taking the minimum dosage of 500mg/day).  So I now monitor my FSB (Fasting Blood Glucose) at least twice a day.  I have to admit the results have, on occasion, surprised me.  This has convinced me all the more that cancer patients really ought to pay far more attention to diet and never assume anything.

In this regard I have been dealing with two mysteries.  The first is long standing.  I was not pleased with my FSB (this was before I started taking Metformin) because I believed that - in my case - it should have been far lower since I follow a low carb/high fat diet.  However, since starting on Metformin that issue is pretty much resolved, only to reveal another deeper mystery.  I seem to be suffering from a well known effect that is called the "Dawn Phenomena" - wherein my FSB goes UP during the night from the time I take just before bedtime.  Since I am obviously fasting during this time period this is rather disconcerting.  I have no answers yet - just more research on tap.

My oncologist thanks me for the research I do because he has no time to keep up with all the latest studies in the lab.  He is actually following most of my dietary recommendations. Just last week we discussed the latest Metformin research.  He point blank told me that if he had cancer he would be taking it himself!  Please keep in mind that this approach - fighting cancer as a metabolic disease - works across the board on virtually all versions of cancer.  There are about 60 different studies going on regarding Metformin right now.  Some of the most exciting results recently have been in the treatment of breast cancer.

Incidentally I have been on Inlyta at 5mgX2 for one week now.  So far, no side effects.

a_oaklee
Posts: 137
Joined: Nov 2013

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. 

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network