sue61's Message Board Messages

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RE: Sutent cause dry mouth?

by sue61 - March 28, 2013

Hi Bob,I too am suffering with mrcc,I used the mouth wash when I was on sutent my dentist told me about a tablet called Quantum Ora Moist,its a time released tablet that is put on the roof of the mouth and last about 4 hrs. I use it on a regular basis even now. If you come across another tablet that claims to do the same make sure the main ingredient is (xylitol) my dentist said its what causes the moisture in the tablet. I am now on InLyta and it doesn't seem to be working so I'm just waiting to see what is going to be my next treatment,I've already tried sutent,Afinitor and now the InLyta. Good luck with everything Bob. Sue-Canada

RE: Inlyta

by sue61 - March 11, 2013

I started Inlyta in October and so far have had only mild side effects,tired no energy mouth sensitivity to some foods. My tumors however have still continued to grow so we are looking for another chemo to try,we have all ready tried sutent and afinitor.I've been diagnosed with mrcc in July/10 and had right kidney removed and had radiation done then and just finished more radiation on left and right lung and upper right femur,am going for more radiation on sacrum in April.Hope things are going well with you,Sue from Canada

RE: Inlyta-

by sue61 - February 14, 2013

Hi there, I have been on Inlyta since October and only side effects I feels are joint pain and no energy,my dose is 10,mg twice daily. so far no problems with hands or feet up to now.

RE: pawpaw !!

by sue61 - March 13, 2012

My oncologist is ok with me taking the paw paw while on sutent. I find taking the sutent in the evening as close to bedtime as I tried taking it in the afternoon and it just made me feel sick all day. I take it around 8 pm and that way I don't feel sick all day. Good luck.


Natures Sunshine PawPaw

by sue61 - February 11, 2012

I was diagnosed with renal cell carcanoma metastasis and had my right kidney removed Sept. of 2010. I was told that pawpaw was a great treatment for killing cancer cells in your body. I did do some research and it sounds great. Is there anyone who is currently on it who could give me some advise? It doesn't interfere with chemo or other drugs . I will ask my oncologist about it and hope he supports me in this as I feel it will help me. I am currently on sutent and have been for going on my 21st round( 2wks on 1 wk off, 25mg ). I have a tumor in my left sacrum and now have many nodules in my lungs that my doctoc says he can't do anything about as they are too small at this point,but they are so severely painfull. Sue

Low Dose Naltrexone

by sue61 - January 25, 2012

Has anyone or is anyone on this LDN as part of their mrcc treatment? I have just heard about it and am very interested.

RE: Sutent - Stomach Acid

by sue61 - March 01, 2011

I never put the two together. I have stomach problems with gastric ulcers so just assumed it was from that and the pain meds. I am taking nexium 40mgs twice daily with no improvement yet. The doctor put me on metoclop 10mg 4 times a day and the side effects were too bad to continue,and it was beginning to work. I had a good night sleep without choking on bile or food or drink coming back up. I put books under the headboard to elevate the bed and added an extra pillow and still no luck . What`s next, I`m waiting for a call from my doctor. Look luck out there.

RE: Mom is gone.....

by sue61 - March 01, 2011

I am sooo sorry for your loss. I am a mother of 2 and have mrcc and always worry about my boys living without me to look out for them. I can't immagine the pain your feeling. My prayers are with you and your family. Sue/Canada and MRCC Fighter. 

RE: Side effects of sutent??

by sue61 - March 01, 2011

I"ve only been on sutent now for 3 rounds , they lower the dose after my first round from 50mg to 25mgs. I feel better but I do have severe acid reflux,which was at night but is now 27/7. I'm taking nexium 40mg twice daily and no improvement. My concern is that the low dose is not working and the acid reflux will cause serious esophageal problems. I was diagnosed with mrcc last August and had my right kidney removed and it spread to the sacrum,sacral joint and now after my ct scan last week because of chest pain , I have multiple noduales in my lungs. What does that mean? The doctor said not to worry about it. And of course I don't believe him. Can anyone tell me about these noduales. Thanks Sue/Canada and MRCC Fighter

Sutent and tumor

by sue61 - February 10, 2011

I have metastasic rcc,the spread is in the left sacrum and sacral joint.  Had the right kdney removed. Can the tumor in this area shrink being on sutent? I'm so worried that the sutent won't help.. Does anyone else out there have cancer that spread in this area? Please let me know if you are out there. Sue-Canada-49 yrs. old

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About sue61

Renal Cell Cancer
Cancer Treatments, Emotional Support, Prevention Tips, Side Effects

Hi everyone, I was just diagnosed with rcc this past august,It has spread in the left side of my sacrum. I was first diagnosed with fybromyalgia 5 yrs ago. Every time I went to the doctor with another pain and problem he always related it to fybro. I had my right kidyney removed in Sept. and had radiation for pain (with no relief). Now I'm waiting to get on sutent along with zometa. I'm so nervous and anxious about this drug,I don't know what to expect. Any tips and advice would be great. I'm 49, married ,mother of 2 and grandmother of 2.

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