Reaching Out

Hello all,

I have been on this site many times reading questions and replies regarding renal cell carcinoma (kidney cancer).  It has been a big help and I thank you.  I am still reaching out to find as much information as I can, in hopes to educate myself as much as possible.  Maybe you all can help.

My husband was first diagnosed with RCC in April 2003.  He had several tumors from his right kidney to his left kidney.  It was also in his adrenal glands.  He had his left kidney and both adrenal glands removed in June of 2003, along with the tumor on his right kidney.  The doctors said they got it all and they were 99% sure of it.  They did a CT scan 6 months later and all was still clear.  That was the last scan they did until April of this year.  We found that not only had the cancer returned, but it had metastiszed.  He has several tumors in the cavity of where his left kidney once was, several around the right kidney, small tumors in both lungs and had spread to several nodes.  He was told there is no cure but with SUTENT, it may slow, or even stop, further growth.  He is ending his second phase of sutent (50mg) and having a terrible time with eating because of his mouth hurting, and also diffiulty swallowing.  I'm sorry I got long winded here but I was wondering if there is anyone out there with similar diagnosis?  Also, is there anything that helps the tender mouth?

I appreciate anything that will help make him compfortable regarding the sutent.  I would also like to hear from those with similiar diagnosis to.

Thanks,

Darla 

On 7/24/2007 Jeffs girl wrote:

Hello all,

I have been on this site many times reading questions and replies regarding renal cell carcinoma (kidney cancer).  It has been a big help and I thank you.  I am still reaching out to find as much information as I can, in hopes to educate myself as much as possible.  Maybe you all can help.

My husband was first diagnosed with RCC in April 2003.  He had several tumors from his right kidney to his left kidney.  It was also in his adrenal glands.  He had his left kidney and both adrenal glands removed in June of 2003, along with the tumor on his right kidney.  The doctors said they got it all and they were 99% sure of it.  They did a CT scan 6 months later and all was still clear.  That was the last scan they did until April of this year.  We found that not only had the cancer returned, but it had metastiszed.  He has several tumors in the cavity of where his left kidney once was, several around the right kidney, small tumors in both lungs and had spread to several nodes.  He was told there is no cure but with SUTENT, it may slow, or even stop, further growth.  He is ending his second phase of sutent (50mg) and having a terrible time with eating because of his mouth hurting, and also diffiulty swallowing.  I'm sorry I got long winded here but I was wondering if there is anyone out there with similar diagnosis?  Also, is there anything that helps the tender mouth?

I appreciate anything that will help make him compfortable regarding the sutent.  I would also like to hear from those with similiar diagnosis to.

Thanks,

Darla 

Hi Darla,

unfortunately the sore mouth is a very common side effect.  In fact, its the only one my mom seems to get from it.  I guess at the end of the day, its a small price to pay if in fact the sutent works well in his body.

For alot of people, it has been fantastic.

For the sore mouth, people have tried using a 'Miracle mouth wash'

i am pretty sure i posted it on here a while back.  You might have buy the products separately at the drug store and mix it yourself.

Someone emailed us these two recipes and we did the first one.

Magic Mouthwash recipe
Viscous Lidocaine (1 part)
Maalox (1 part)
Benadryl (1 part)

this is the other one:

1. Magic Mouthwash Ingredients
   • 28cc Mylanta
   • 30cc Nystatin
   • 30cc Benadryl liquid
   • 30cc Viscous Xylocaine
   • 2cc Hydrocortisone/Wydase

its really a temporary relief but its worth a try....

Thank you for the recipe, I will try it.  My husband has many other side affects, but this pain in his mouth and the swallowing problem are the two that is causing him not to eat.  I really do appreciate your help.

Thanks,

Darla

Hi Darla,

  My name is Susan,my sister Connie has Stage IV RCC.Tumor on Right Kidney,mets to liver and 1 lung.Tumor inoperable.

  She finished her 4th round of Sutent the last of June 07.She was dx Feb 22 2007.She had trouble with the sore mouth and became severly dehydrated and malnourished was in hospital 2 days.She goes to the Cancer Treatment Center of America in Tulsa,Ok.

The Sutent we gave good raves.spot on lung was still there,liver had 6 spots and now has 3.Tumor had shrank.Not sure of the measurements but she said it looked like a big slice was taken off of it.Praise the LORD.

Anyways,Sis started on the brand new drug for kidney cancer called Torisel.First person to try this at their facility.

If you look under the post TORISEL on this kidney cancer  board you can read that.

I a very sorry to have rambled on.I pray if your husband trys Sutent it will work as well for him.You and yours are in our prayers

Will keep u updated as long as u keep us updated on your progress

in this fight against this nasty beast.

Peace

Susan

I am on sutent too and having lots of side effects including sore mouth.  I appreciate all of these guide suggestions guys and am glad to hear sutent is working.  I am getting ready to start my second cycle and not due for scans until early September so I am hopeful. IL2 failed, Nexavar failed and hopefully sutent will do the job despite the side effects.  I know from IL2 what truly horrible side effects there can be so I understand that sutents side effects are a small price to pay for successful stopping this thing.  

Also good to hear about someone trying Toresil.... please keep us posted.

Chris from Arkansas 

I agree with Robbie2, Biotene toothpaste and mouthwash is the best solution for dry mouth and mouth sores.  I'm on my 3rd treatment cycle of Sutent and this time around I'm not experiencing any side effects at all.

Hurley B

On 7/30/2007 hurley wrote:

I agree with Robbie2, Biotene toothpaste and mouthwash is the best solution for dry mouth and mouth sores.  I'm on my 3rd treatment cycle of Sutent and this time around I'm not experiencing any side effects at all.

Hurley B

Hurley,

Thank you for your reply.  We will try this toothpaste and mouthwash and hope it helps.  He is about to start his 3 cycle and it seems he suffers from more side effects each cycle.  Good luck to you and thanks for the info.

On 7/25/2007 Robbie2 wrote:

Hi, I just wanted to mention Biotene mouthwash and toothpaste. It has helped me alot.  Also, takin Zantac along with Protonix seems to have helped with the mouth sores.  I feel some of the sores are from the acidic condition Sutent creates.  Anyway the majic mouthwash caused my mouth to burn.  Pease try Biotene as it is sold in most drugstores. God Bless

Thank you Robbie.  I will go out and purchase ASAP.  I am sorry to hear of the other drugs not working for you.  Hopefully sutent will be the one that works for you, as it has for others.

God bless you!

Hi Susan,

I hope your sister is doing well on her treatment.  My husband is on his 14 day break for now but will start back next week.  He is diabetic and harder for him to heal from some of these effects he's experiencing.  He does heel from most.  I think the difficulty swallowing has been the worst yet.  Has your sister started the new drug?  Please let her know she, along with many others facing this same sickness, are in my prayers.  You take care of yourself.

God Bless and take care,

Jeff's girl