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Mouth Sores - CHRCC - One cycle (12 Weeks) of Torisel done!

PK_Chicago
Posts: 29
Joined: Mar 2012

Hi all - I know its been a long time since I posted!  I have just completed my first 12 week cycle of Torisel.  I've felt really good throughout and this week I had my first set of scans after treatment and the results were very good!  Nothing new in th CT scan and no new legions shown in the bone scan - and there is bone growth around the pelvic fracture which the doctor said is a positive sign!

 

I'm posting for two reasons - first to report that so far torisel seems to be showing positive results with the CHRCC, second is to ask if anyone out there has any remedies for moth sores that they've discovered?

Please let me know -

PK

I am alive
Posts: 219
Joined: Jul 2012

Fantastic news!  I also have CHRCC so I'm curious about what other drugs - if any - you have used to date. My first and only drug  experience thus far is a clinical trial of a bi-weekly infusion of Avastin and a daily 10 mg pill of Afinitor. So far, so good! It's been a year. You said your latest scans showed no new bone lesions. May I ask you where and how many lesions you have? I have two lesions in the L2 vertebrae that have been stable for about 18 months.

 As for mouth sores, have you tried Triamcinolone Acentonide? It's a paste that you put directly on each mouth sore (I apply it with a q-tip) and it does provide some pain relief. Use it diligently and with luck the sores should start to dissipate in a few days. It's available by prescription.. I have also had response with BIOTENE, a non-alcohol mouth wash specifically for dry mouth, available at the drug store and some grocery stores.Use it 4-5 times a day when you have mouth sores, and once or twice a day when the sores go away. Stay away from salty and spicey foods, which can exacerbate the sores. Also tomato sauce and other acidic foods while dealing with active sores. I hope they disappear soon. They ARE a drag! Good luck!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hi PK, 

Congratulations! Glad to hear you have had good results, keep it going!....When treating mouth sores in the past, I have always used sea salt in fairly warm water, or a couple of drops of tea tree prepared the same way. Also a baking soda paste helps, coat the sore and hold the paste in place before spitting out.

Djinnie

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

It's good to hear from you, PK, especially with such excellent news.   As it happens, it's particularly good for me because, if/when Votrient fails, there's discussion of whether it might be possible for me to try Torisel and good news like yours helps to tip the odds in the right direction.

Regarding the mouth sores, I've had Difflam prescribed for me, here in Scotland.  It's a pleasant-tasting analgesic mouth rinse that helps the immediate pain and also helps to clear up the soreness.  It's not so easy to get hold of in The States but a friend of mine in NY succeeded in geting it via Amazon,  if I remember correctly, on my recommendation, and was glad she did.  Good oral hygiene is worth the effort and just good old rinses with hot salty water is useful too.

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

I too am on Torisel. I have completed my 8th week. Had to miss one because of severe rash. I had mouth sores the first 3 weeks, my oncologist put me on #180 C-KCC Doxy Stomatitis Cocktail rinse, 100 mg. It is very pleasent tasting, and like rinsing your mouth with oragel, it numbs your tongue and within 4 days, the sores were gone. I haven 't needed anymore since. 

I go in for a CT scan on Monday because I have had unusual pains on my right side, the left kidney was removed in April. Wasn't originally scheduled for the scan until 9/9. I hope I show as good of results as you have. You're the first person on this board that I have noticed being on this drug. I too am from the Chicago area.

Good luck to you!

PK_Chicago
Posts: 29
Joined: Mar 2012

Are they giving you Benadryl first?  I have never had a reaction so I guess I'm lucky!

Pains and pangs are a pain aren't they?!?!?!?  My kidney cancer was found during a CT scan for my recurring diverticulitus - so I had 6 inches of my colon AND my kidney removed on the same day!  Every cramp and odd noise worries me! 

I'm sure it's nothing - maybe things just shifting around!

Where are you getting treated?

PK

PK_Chicago
Posts: 29
Joined: Mar 2012

Thanks for all the feedback!

My lesions are in my right shoulder blade and in my pubic bone - both have never caused me any pain,  I give credit to my doctor at Northwestern for digging around all the data around CHRCC and deciding on Torisel over Sutent for now.  Hopefully I'll continue to progress in a positive direction.

Hey Wedge - Why was Torisel not an option before?

This forum continues to amaze me!

Where in Chicago are you being treated? 

PK

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

PK, it's Baaa-bs who's in the Chicago area.  As I mentioned above, I'm in Scotland, where we have no systemic treatments for RCC after first line.   First line is Sutent or Votrient and having elected one, you can't then get the other.   Torisel has never been an option for me - there has just been a question raised as to whether there might be some way of trying it but, as things stand, if Votrient fails for me, there's nowhere else to go. 

If you were able to point me to any papers on Torisel for chRCC  I'd be eternally grateful.

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

I am being treated by The Northshore Kellogg Cancer Center, the hospital I go to is Glenbrook in Glenview. The very first treatment, after receiving 25 (mg?) of Benedryl, Zofrain, and pepcid, I broke out in hives in 10 minutes. Now they give me double the benadryl along with the other drugs. They admister 15 minutes of saline, 15 minutes of benadryl, 15 minutes of zofrain, and then 15 minutes of pepcid. I wait 30 minutes for all to go through my system, then Torisel for an hour drip, not 30 minutes. The rash I get is fire engine red covering my chest, under arms, back, and hips running down my thighs. I am on a daily low dose predisone to help and it does with the rash, but every so often, I can't scratch my back enough!

I have been diagnosed with stage IV RCC, sarcomatoid. They found and removed a tumor the size of a nerf football in my left kidney, removed 4 enlarged lymph nodes, one showing sarcomatoid cancer, a two inch lesion on my right lung - sarcomatoid, and I have a lesion on my liver characteristic to sarcomatoid that at this time they will not do anything about. My last CT scan showed 5 small (half the size of a pencil eraser) spots on my left lung. They are hoping the Torisel will take care of the spots on my lung, and shrink the lesion on the liver.

You're right, this board is amazing. It is full of information and wonderful people going through the same experiences I am going through. Nice to have a support group that doesn't judge or make you feel like you can't ask any question.  Love you guys!

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