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

Gordon Charles said:

So that's where my back pain came from......
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!

KJones1969 said:

I haven't either
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

Texas_wedge said:

Meaning of the term "chemo"
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!

KJones1969 said:

Afinitor Update

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.

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.