Trial Drug Axitinib

On Feb 04, 2011 2:59 AM lildeb wrote:

Motherof3..my husband had been taking it for kidney cancer ..clear cell.  He also had issues with his voice.  It would cause him to talk really soft and be hoarse most of the time then it would clear (the hoarseness) then go back.  The talking softly never went away till he came off the drug in beginning of January.  He was taking 2mg 2/day for just over a year and it had shrunk 33% of his cancer overall but in December it was like a light switch was flipped and it stopped working for him and he started to have liver issues that were caused by both disease and drug.  You are so right about not finding many discussions about this drug.  I had put out a message and it was quite some time before the first person responded.  I am happy to answer any questions for you that I have answers for.  Only word of advice and take it for what it is worth....everytime he has ct scans and such get written copies of the reports to keep tabs on his tests...especially blood tests.   If numbers on blood tests start to go higher than what he normally runs speak up.  Best to you and your family.  Stay in touch and will keep my fingers crossed it works for you.

Hi there lildeb....

My hubby has now been on the Axitinib trial for almost 8 weeks.  He will have catscan down on March 18th to tell us how things are going.  I'm really nervous about that appoinment!  I'm mostly afraid of what has happened to your husband and the drug not working anymore.

With regards to your advice about copies of reports, i don't typically ask for them.  His blood work is always perfect, there has never been any evidence of cancer in his blood - which makes his whole diagnosis very odd.  I shouldn't be on this message board because he is not a Kidney Cancer patient, he has primary Liver Cancer - but there aren't any exisiting Axitinib trials for Liver as he is the first in the world to be on it.

What is happening with your husband now?  Is he on a new drug?  Did they say why he stopeed responding Axitinib?

I will include him in my prayers and hope that something else works for him.

I've been reading all your posts and wanted to join in the discussion.  I think mainly for support.  My husband has kidney cancer.  He had his left kidney and tumor removed in November but it was discovered that the cancer has spread to his lungs.  He started the Trial Axitinib on January 31st.  For the first few weeks he was feeling pretty good.  He has progressively started to feel lousy for the past few weeks and I feel somewhat helpless.  He is very very tired, has random sores on his body and says he generally feels achy all over and terrible.  His pressure has been consistantly high and the doctor has increased his blood pressure medication and it seems to be coming down a bit, but not where it should be.  Always higher at night.  He has been eating good, not sleeping very well at night but has been trying to work during the day.  We have not had our first scan yet so I'm not sure how well this drug is working.  

Before the trial drug we were offered Sutent, which was not covered by his insurance and it is extremely expensive.   I am not sure if it will help me to talk about this with all of you but any advise you can give me is much appreciated. 

Julie, Anytime we all can provide support we love too.  We are unfortunately all in this together and that is what this site is for!!  Welcome.  I am so sorry to hear about your husband.  It is truly shocking when you find out isn't it?  If you don't mind me asking how old is your husband?  I am so glad that your drs put him on something so soon.  My husband did not and that was not good as the cancer started growing back very soon after surgery.  My husband was feeling fine for about a week and then started to feel lousy too.  Extremely fatigued.  He ended up going on disability from work in Feb of 10, 2 months after he started the drug.  Your husband is dealing with some side effects that we did not have to.  They will adjust meds to get the blood pressure down.  Is he on atenol (sp?)  My hubby was but they took him off due to his bp staying normal.  My hubby could not eat as he was nauseau just about all of the time.  Ended up on 3 different nauseau meds at once.  No sores for us though.  Sleeping was tough so he started on lorazapam which also helped with the restless leg syndrome that he got from it.   Your first scan must be coming up.  Just remember to take one day at a time.  Live in the moment and enjoy what you have.  I found that keeping myself up on any info I could get my hands on made me feel less helpless.  Till recently I did not feel that way but now that my hubby is in the waiting game it is hard as I can not direct anything in a certain direction and well feeling helpless is not what I do best.  Keep in touch and let me know how you all are doing.  Deb

Hi Julie,

Just read your post.  My husband was actually doing well on Axitinib for the first 4 weeks or so.  He was on 5 mg and then they increased to 7mg a few weeks ago, that is when everything suddenly got worse.

He has been experiencing so much pain in different areas - mostly in the areas where we know the cancer is.

He too has mets to the lungs, but also in one of his ribs, on the adrenal gland and his liver (he has primary liver cancer).

His BP has started to rise since they increased the dose, he is not yet on BP meds, but i think it's going to have to happen soon as it is climbing up. 

His appetite is suprisingly good, but similar to your husband, he is fatigued and has sores in his nose & throat and likely further down in his GI Tract.  His voice has gone up a few pitches and very raspy...this is one of the side effects though, it's called Dysphonia.

I am so exhausted just watching him suffer.  It's so hard to distinguish what is actually causing this pain, the drug or the disease?  Before he started the drug, he was fine, so it's likely not the disease.  But you can't help but wonder, is the drug actually working and is that why there is so much pain???  Or is the cancer getting worse?  It's always a guessing game and i my mind can't handle it anymore.

We have 3 small children to boot, so my situation couldn't be more exhausting.  It's nice to know that there are others that can support me (like you and lildeb) but i wish we weren't in this situation, you know?

Anyhow, his scans are this week and results are next week.

I will keep you all posted on what they are.  In the first 2 weeks on this trial, his liver tumour had shrunk almost 1 cm....so that is very promising.  He was previously on Avastin/Torisel for 8 weeks prior to this drug and it didn't stablize or shrink tumours, there was actually growth....so the fact that Axitinib had already shown something in 2 weeks got our hopes up.  I just hope it is working on the rest of his body.

I'm praying for your husband and lildeb's as well.

I want this nightmare to be over.

Marisa

Marissa,

My husband too in the first 2 weeks on axitnib showed shrinkage.  It was so amazing to see it work that fast.  My husband never complained about pain in areas especially where the cancer is. You are lucky in the fact that he has a good appetite.  Mine did not till he was off the meds and the nausea went away.  At least now he is eating especially cake that my daughter makes him.  At least one a week.  I understand about not being able to watch them and how much it hurts.  Give yourself credit you are much stronger than you think..especially since you took time for you to come on this site to get support!!!  I whole heartedly agree that we wish no one was in this situation.  Keep us up to date on his scans.  We go for our next one on the 22nd.  They are talking about putting him on another treatment but since axitnib stopped working not sure what else that is not like it that they will choose.  How old are your children if you do not mind me asking.  My daughter is 13.  Glad that we can support each other and Julie to along with all the others that are in this terrible position.  Take care and stay in touch and prayers are out to all of us in this situation and I pray for the strength to all us caregivers!!!

Hi Julie515

I have been fighting stasge iv rcc for over 5 years.  I have been on Sutent for almost 4 years.  There are several people on this site that get Sutent free from Phizer.  If you and the oncologist think Sutent is the treatment of choice, you with the help of the oncologist's office can begin the application for Sutent.  I do not know the details as my insurance covers the cost.  I wish you and your husband good luck.

Jim

On feb 04, 2011 1.23 jeffro wrote:

Hi,  I'm on Axinitib and have been for 10 months, side effects seem to be dependant on dose, I'm on 7mg 2/day  had some stomach and diarrea issues.  The drug has been very successful, My cancer on my last scan was gone. Clean, I had 3 mets 14 months after a kidney was removed. so far so good. I'm being treated thru the Cleveland Clinic phase 3 trial.

Jeff

Hi,

Please I need your help.

I'm writing form Italy, and I would like to have some more information about the drug AXINITIB. In Italy we don't have it yet, but the doctors said to my father that it would be necessary to find it as soon as possible.. In fact, it is our last chance. My father started with the kidney cancer, and than to the lungs. The drugs used were SUTENT, NEXAVAR and AFINITOR.

If you could tell me where are your writing from and where dind you find the drug, maybe I will be possible for us to get it faster.

Thank you so much for the attention.

Best Regards

Last post on results of Axitinib where in March of 2011. Does any one have updated results? Best wishes to your father and family in Italy.

Robert

Alessandra, I think that was or is a drug tial or test. it may not be on the open market yet. I do not no that for a fact, so keep searching and best wishes.

Robert

Washington State, USA

   If I am not mistaken, Axitinib was FDA approved recently and is now marketed under the trade name Inlyta (by Pfizer). My brother (mrcc to the lungs) was on the trial for 13 months before he was taken off the trial due to mets to his spine. It initially showed promise with size reduction to his lung mets. He is now on Afinitor (just coming to 2 months).

   All the best to everyone.

David