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No More Afinitor for now??? Back on 7.5 mg of Afinitor since last week

KJones1969
Posts: 158
Joined: Mar 2012

My husband started Afinitor 12 days ago after Votrient stopped working for him after 5 1/2 months. Well he is only 12 days in and he has a bad rash, severe back pain and his face and eyes are swollen and puffy. His Renal Oncologist took him off of Afinitor until at least next week when he goes back to Duke. I am curious if any of you that have been on Afinitor have had this happen? If so were you able to go back on it or did you have to switch to other treatment options? The triage nurse talked like he would not go back on it next week with this happening already. Oh he is also more fatique and staying in bed at least 15-16 hours a day.

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

Kathy - I've seen little on the side effects of Afinitor, but wanted to express my disappointment that your husband only tolerated for 12 days. Have they mentioned any other drug if they in fact have to remove him from Afinitor? I feel your frustration; hang in there.

KJones1969
Posts: 158
Joined: Mar 2012

Alice,

I haven't seen much on here about side effects either. He did so well on Votrient for the 5 1/2 months, if only it would of kept working. His doctor did mention one other drug to try before he started Afinitor but I can't remember what it is. I guess next Friday we will find out what it is.

I know you feel my frustration, yall have been through a lot as well. I just pray, keep my head up and keep the hubs in good spirits all of the time.

Thanks

KJones1969
Posts: 158
Joined: Mar 2012

Has anyone on here taken or have a family member who has taken Afinitor?

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Greetings KJ: I started on 5mg Afinitor ??? weeks ago.. then increased to 10mg. The onset of my back pain was somewhere in that general period. Felt like a pulled muscle and seemed to spasm when I turned a certain way. At first it was in a specific muscle and now it seems to move around a bit. It definitely has an impact on my daily activities. Having said that... I go in Tuesday (13th) for a CT to check the status of my mets and if things are at least stable I'll live with it (pun intended). Sorry your hubby is having issues... I've been on a few different meds and understand the desire for things to just stabilize. Good Luck and stay positive!

I am alive
Posts: 221
Joined: Jul 2012

I've been taking daily 10mg Afinitor with bi-weekly Avastin for 15 weeks. Most recent se - an itchy rash on chest, stomach, back - was immediately (like within one day) gotten under control with a prescription of Fluocinonide cream .05 percent. For me, the side effects come and go. The rash popped up for the first time about two weeks ago. It is no longer itchy and is starting to fade away. I'm sorry to hear that your husband's face and eyes have gotten hugely puffy too. I haven't heard of that se with Afinitor. Is he on other meds that might interact with Afinitor? Wishing you the best.

angec's picture
angec
Posts: 622
Joined: Mar 2012

Have been trying to find out if Affinitor has Chemo in it? Does anyone know for sure? I hope the bad side affects go away. Did the doctor say what is causing it exactly? I have not seen anyone report that their face swelled up like that. Praying that you feel better! Hugs!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Ange, you've enquired about chemo in connection with both Votrient and axitinib and I'd like to try to explain the relationship. I hope what I'm about to say is entirely accurate but if it's not it won't be very far wrong on the main issues.

There's a fundamental problem of nomenclature that has come about just by historical accident.

In the days before the advent of the cytokines (interferon and interleukin) there were 3 main treatment modalities to be considered for RCC - surgery, which if the cancer was caught early enough could effect a total cure, radiotherapy and chemotherapy, both of which were, and are, essentially palliative and life-extending but not cures. So there were the knife, radiation and drugs. The latter constituted "chemo" and at that time the only drugs in use were 'cytotoxic', in other words, they attacked cancer cells and healthy cells equally and indiscriminately - hence the significant toxicity.

Then, along came the cytokine treatments, cytokines being natural biochemicals with regulatory functions, in particular in the signaling systems between cells. Because of confusions as to usage of the term, from 2008 these treatments are preferably referred to as immunomodulatory agents, rather than cytokines. (I believe the latest monoclonal antibody treatments are also classified as immunomodulatory.) Although there are considerable side-effects, especially with HDIL2, these agents aren't cytotoxic like the earlier drugs.

In more recent years, the 'targeted' therapies have emerged, starting with sorafenib (Nexavar) and other names you know, latest being axitinib, with others soon to be approved, one hopes, like tivozanib. These, also, don't have the scattergun approach of the first generation drugs which were designed to attack cancer cells directly but which had nasty side-effects because they attacked all cells, including those unlucky healthy cells that fell prey to them.

So, if one uses the term "chemo" just to set drug therapy apart from surgery and radiotherapy, then it refers to any drug used for treatment. However, that's NOT the way the term "chemo" is currently used. Rather, it's used to distinguish the old cytotoxic drugs from the immunomodulatory ones and the targeted therapies.

So, Votrient and Afinitor, being targeted therapies, aren't "chemo" drugs. (But that doesn't mean that they have no toxicity - the newer drugs tend to be cardiotoxic so patients need to be monitored appropriately with that in mind.

I hope I've helped to clear your mind a bit on the subject, rather than confuse you!

angec's picture
angec
Posts: 622
Joined: Mar 2012

Thanks TW for the information. It makes sense. The reason I keep asking is because the Doctor keeps saying they all have chemo in them. He didnt explain it like you just did. That new drug sounds promising. Just wondering how that one will differ from the others. Also, I hear it has even less side affects..

KJones1969
Posts: 158
Joined: Mar 2012

He is using that cream as well for his rash. He was only on Afinitor for 10 days or so then after the rash, swollen face and back pain they took him off of it. He didn't take anything else with the Afinitor and he goes back to the doctor on Friday so we will see what the next step is.

Thank God for prayers!!!

I'll be thinking of you!

Karen

KJones1969
Posts: 158
Joined: Mar 2012

Hello GC - My husband started right out on 10 mg and almost immediately he had back pain. He said it feels like a pulled muscle or spasm and just like yours when he turns a certain way the pain is much worse. He is taking more pain meds because of it but what else can you do? I hope your CT went well yesterday the 13th, please let us know. Yeah stabilization would be awesome! :) :)

KJones1969
Posts: 158
Joined: Mar 2012

Well as of this past Friday the 4th my husband is off of Afinitor for good and says if they next drug ride is as bad as this one he will not do it. He was spoiled with very few side effects on Votrient and Afinitor has been nothing by problems. He started about 2 weeks ago with what he said was a cold. It was awful along with shortness of breath. I begged him to go to the doctor, he said well since it is the holidays we will have to go to the emergency room or urgent care and the er will admit him in the hospital. Well off we went to urgent care and it was a joke. The guy didn't do anything but hear him cough and said yeap he has a cold, gave a prescription cough medicine and off we came home. Well he got worse so I called the Triage Nurse at Duke. She said he needs to go to the er and be checked for one of the side effects because if he has it this could be potentially hazardous. Well he would not go so they took him off of it on Friday. He has started feeling a little better over the weekend with little cough and shortness of breath isn't as bad as it was. She told me if he kept doing worse to call 911. My how stubborn can he be, especially given how he was last year when going ot the hospital to start with.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Sorry to hear your latest news. Having had such a good ride on Votrient, it's understandable that your Hubby would jib at a treatment that gives him bad side-effects.  there seems to be a growing opinion that after successful response on one VEGF drug it's best to try other drugs in the same category.  You couldn't remember the other one that was mentioned. Might it have been Sutent (sunitinib) or Nexavar (sorafenib)?  A relative newcomer that is doing well for some patients is Inlyta (axitinib) and tivozanib is nearly here.  There are other promising possibilities like nivolumab and its growing list of competitors. 

Has the possibility of rechallenging with Votrient, now, or later, been discussed. For some reasons yet unknown some patients can get benefit from some of these drugs a second time around.  I do hope they find the right treatment for him now - at least there are plenty of possible choices these days.

KJones1969
Posts: 158
Joined: Mar 2012

Thanks for your comments. The next drug his doctor said he may try is Inlyta. He also told us that once he comes off of one drug the door will be shut on it and it isn't available as an option. He told us at the last visit there are 7 drugs right now he can try him on and if Afinitor is out that will be 2 of those drugs so on to #3. We will find out more on Friday of this week. He has cat scans, bone scans and blood work.

I do like the idea of there being at least 5 more options right now for him and as far as they have come with kidney cancer treatment there should be more in the near future. His doctor told him we could possibly look at a clinical trial this time but if he can't get in one or there isn't one that is a good match this is his last opportunity of getting in one. He said once you leave the second line of therapy if you don't do a clinical trial that it usually doesn't work and isn't offered as an option again.

We have a long day Friday but I will keep you guys informed with what happens.

Godspeed for all patients and caregivers on here.

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

Hi K - Sorry to hear the Afinitor has been a problem. Is it possible that he actually could have been hit with the flu or some upper respiratory attack?

Just recently (right before Christmas) John was hit hard with what he interpreted to be side effects of the Votrient -- vomiting. diarrhea, cramping--and was pretty concerned that this was the beginning of the SE's that had pretty much been absent up until then. But then five days later, the same exact symptoms hit me, obviously one of the 24 hour bugs. Though I was pretty miserable for those 24 hours, I think John was relieved that it wasn't a SE that he'd be seeing more of.  I think all of us are guilty of attributing every ache and pain and illness to SE's of the cancer drugs before considering viruses and flu,   

If not, did your husband's doctor explain why he wanted to try  Affinitor and not one of the other VEGF drugs?

Hope this is just a bump in the road and he'll get back to charging the cancer head on. 

 

 

KJones1969
Posts: 158
Joined: Mar 2012

Thanks Alice for your posting. I thought about the flu or upper respiratory infection but the triage nurse seems to think it is ?????? pneumonitis but he wouldn't go to the ED to be checked for that. He said he has an appointment this Friday at Duke so refused to go. The nurse told me if he got to bad off to call 911 so that I will. He is still coughing pretty bad and still has shortness of breath when walking at all. It hasn't gotten worse so I hope that is a good sign.

His doctor said that Afinitor was the best second line of therapy to offer him. He told us it would hopefully offer the best outcome with the least side effects. One thing I didn't know when he started it is with this drug they are just looking for the lung nodules to stay the same and not decrease in size.

I hope you and John are feeling better from your bug. You know cancer is a bump in the road Alice, I am just praying that all of these road bumps will go away soon or at lease get a little smoother.

 

Karen

 

angec's picture
angec
Posts: 622
Joined: Mar 2012

Sorry to hear that. What does of Votrient was he on? Also what dose of Affinitor? Is there any way to lower the dose of Affinitor? Has he also tried Nexavar, Sutent, Inlyta, Avastin? There are so many drugs out there. Any chance of getting him into any trials? Keep looking for answers. Hopefully MDX will be approved sooner or later so others can try that. I am praying for you!

KJones1969
Posts: 158
Joined: Mar 2012

He was on Votrient 800mg daily. He started out on 10mg of Afinitor and when we went back to the doctor the other day they started him back on 7.5mg to see how that helps. His doctor told us there are 7 drugs we can try and this is drug 2, he wants to try to get the most out of this one if he can before trying something else. The next one he will try is Inlyta. He goes to Duke and I have asked about trials, there are none that he qualifies for. :(

sean_12
Posts: 5
Joined: Jun 2013

Hi KJones

I have started on affinitor 10mg to day. I was on Inlyta for 4 months the dose was tapered off to 2mg twice daily because my skin peeling of in my hands and sole. But suddenly I had a blurry vison in the rt eye for 10 minutes and later developed blurry vision rt eye that lasted for 10 minutes. The eye specialist diagnosed it as Central retinal vein occlusion and it can occur with 3 % patients on Inlyta. Now my vision is normal. But the oncologist thought it is risky to continue Inlyta and started me on afinitor.

Please let me know how your husband is doing ?

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