Am I the only one?

alice124 said:

Torisel

I don't know anyone off the top of my head who is being treated with Torisel, but I quickly checked a web page, http://www.torisel.com/side-effects.aspx and it didn't list fever as a normal side effect of the medication. In fact, it says contact your doctor should you run a fever.

 

I also would be a bit concerned with your taking so much Advil. I don't know the particulars of your RCC and was unable to find your earlier posts, but RCC  patients are usually instructed to use NSAIDS (Advil, Alleve, Motrin, etc.) sparingly if at all. I'm not a doctor but I'd be concerned if I were you and would be asking your doctor a lot of questions.

I think Alice is right on this one and you should check with your Doctor on the advil thing.  My urologist, oncologist and internist or seem to agree on very little ,all told me to stay away from all NSAIDS.  I think they are hard on the kidney of which most of us only now have one.  As usual I listen to my Doctors and confine myself to perocets

MDCinSC said:

Alice and Don are right on here!

I was FIRMLY warned against NSAIDS!

Check this out!

Michael

It's true that NSAIDs are best avoided if you have a strong reason to protect kidney function, just as tylenol/acetaminophen/paracetamol is to be avoided if you have liver problems.  If you don't, then either of these drugs can be very useful, with the only caution being that taking high doses for a long time may be asking for trouble. 

However, it comes down, as usual, to each individual's circumstances and it's a judgment call that can involve difficult balancing of risks.  This morning, I couldn't have got by without taking tramadol and ibuprofen and liquid morphine, all in quick succession. 

I've needed to abandon paracetamol and co-codamol with high ALT levels (damaged liver function) and codeine (not strong enough).  But, with an eGFR riding at upwards of 60, I don't need to be unduly worried about taking ibuprofen if it gives valuable pain relief.  As we all know, effective pain management is critical for recovery and that, in my present circumstances, outweighs concern about my kidney.

Ironically, opiates are much safer than the likes of Tylenol and Advil - the opiates don't cause organ damage (as acetaminophen and ibuprofen can do). 

One problem with taking powerful opiates is that if they stop proving adequate, where do you go? However, if less potent drugs don't do the job, it could be crazy to not take them if the benefits outweigh that factor. 

Many doctors fail to think things through properly, particularly if they are having bad days and/or are under too much time pressure and workload.  We can all make mistakes in such circumstances, which is why looking out for oneself is very important. 

I commented to my Wife a couple of hours ago that it's a comfort to know that patients who need to take powerful analgesics just about never become addicted.  My Wife (who has more insight than most) observed that the received wisdom in the medical profession is too often naive or unthinking - SO WHAT if one were to become addicted?  It's ludicrous for a doctor to tell a dying patient not to take a powerful painkiller on the grounds that they may become addicted!

Here on the many CSN forums, we have patients on a very wide spectrum of severity of illness.  This is particularly true right here, with RCC, where we have many folks who have had a nephrectomy for a small tumor, caught early, and who are stage 1 or 2 and low grade.  They may well have been totally cured and only need monitoring to ensure any recurrence, should one occur, is also caught early. 

The considerations are totally different for the likes of Fox and myself and those of our other friends here who are stage 4, grade 4, with collections of mets and constant pain.  Very different balances need to be struck by, or for, us.

Baaa-bs said:

thanks everyone

So far, I am not experiencing pain. The fevers are my concern... as they have become very draining. I wake up every morning with a fever of over 100.0 and after taking tylenol, am good until around 1-1:30 pm. Then the rest of the afternoon and evening I require more Tylenol or Advil to break the fevers. The Dr says this is not uncommon for kidney cancer patients and quite frankly the fevers are what sent me to the Dr in the first place before I found out what was wrong. My oncologist has just allowed me to take Advil alternately with the Tylenol to break the fevers and make me more comfortable.

In all of the posts I have noticed that no one complains of fevers. I was just wondering why I seem to be the only one experiencing this. They are hoping that after the torisel really kicks in, the tumors will shrink and maybe stop the fevers. Fevers are a concern because of the treatment, and originally I was told to call my Dr if I have a fever of over 100.0, since fevers are consistent with my cancer I'm to call if I have a fever of over 100.0 and experience other symptoms like new persistant cough, rash, vomiting, etc. So far, it's only the fevers. Guess I should feel pretty lucky, huh?

Thanks for all your insights and suggestions. I'm so glad I found this board.

Yes, undoubtedly you're pretty lucky! 

I imagine there are many of us here who are feverish.  If only either my Wife or myself had taken note when I said to her, several years ago, "I don't know why, but I seem to run a chronic low-grade fever these days" my RCC would have been detected before becoming sarcomatoid.   If we had thought more about it then, it would probably have given me an extra twenty or thirty years life-span. 

Fever is a possible consequence of having cancer.   After two major ops I still have several mets accompanied by night sweats and clammy days.  As it happens, I've been feverish all day today and massive pain medication makes little difference.  (Tylenol might help to keep my temperature down but it's a no-no for me because of liver damage.) 

I haven't bothered to check my temperature for a long while and I guess it's probably lower than yours runs to.  You're right that temperature/fever isn't discussed here very often, as a topic in its own right, and maybe your question will stimulate more discussion by others who have the problem.  Any takers, folks?

Baaa-bs said:

fevers

Texas_wedge,

Thank you for your reply. I too am sarcomtoid with mets to the lung, and liver. I had the horrific night sweats, but once my kidney was removed, those stopped.

I'm interested to know why Torisel was chosen for a sarcomatoid case.  Is this your first drug, or is it a second-line one?  If it's the first, were you given reasons for the choice?

I hope you're getting good results from it on your mets.  How's it going?