Uncertain times

[JJ]

I was recently diagnosed with Stage 4 kidney cancer and still really don't know what to expect? 12 months ago I didn't know I had cancer until my tumor ruptured and within days I had lost a kidney. With no chemo or radiation as an option for treatment I was holding on to the hope that the surgeon had been able to successfully remove all traces of the cancer. Unfortunately this was not to be and now it has spread to both lungs. Wanting to know as much as possible about what I had and after doing my own research I got fairly depressed and confused. I am told due to where my growths are that I have limited options. At present we go from scan to scan to watch how aggressive it may be. I know that there are "targeted therapies" for Metastic Renal cell cancers but have also been advised that given the extent of the side effects that I am better to wait whilst I am still feeling good? At 53 I struggle to know what to do. I am still working and trying to stay positive. Has anyone trialled taking Sutent or any other targeted therapy for advanced Kidney cancer?

[Jules2]

Hiya JJ I haven't had renal cancer and can't really help you. I do hope that you find the answers you are looking for and perhaps someone who has experience in that area will be reading this. One thing to remember is that statistics are just numbers and we don't all necessarily fit into that number that is allocated to our situation. Nearly 25 years ago I was given a month to live with my first cancer diagnosis and I am still around and going to be trying for 25 years on this last diagnosis. 🙂 Julie

[JJ]

Julie, Thank you for your positive post. You are right about statistics and it is my aim to 'buck' the trend! So good to hear success stories such as yours. Cheers

[talljohn]

Hi JJ Just started my 18th course of Sutent. Votrient is the new targeted therapy for RCC with apparently less serious side effects than Sutent. At the moment my oncologist is keeping me on Sutent because I am coping so well - he often just shakes his head in disbelief. Remember, everyone is different. Actually you are lucky to catch me - if it wasn't for being short staffed in my business I would have been off on another overseas trip - that's how well I am coping with the side effects. Please check out things I have written to other people with RCC on this site over the past 28 months. I'll be in touch soon. John

[JJ]

John, Great to hear how well things have gone for you and that Sutent has worked so effectively. Certainly gives me a positive perspective. If you are open to sharing how advanced was your condition when you commenced Sutent? Clearly you have a great approach and it is paying dividends. So good to hear. I definitely will check out the other comments. Thanks for the lead and for your post. Cheers JJ

[talljohn]

Hi JJ As I understand it, the treatment for RCC is surgery and taking Sutent or Votrient. That's it! No other options. My RCC had spread from my right kidney to both my lungs. The surgeons removed my right kidney and the bottom lobe of my right lung as RCC had established itself pretty well there too. Without doing biopsies on 3 nodules in my left lung the team concluded from scans that those nodules were also RCC. When taking Sutent the routine is 4 weeks on then 2 weeks off. At the end of each cycle you have a blood test to see that your insides (especially liver) are not being destroyed by the sutent. After 3 cycles you have a CT scan (chest abdomen pelvis) to check on changes to metastisis (ie mets or secondaries or nodules). If you are being effected by the sutent they can drop the dosage from 50mg to 25 or 10 mg. I am still on 50mg. My liver is still working very well. My cycle has been altered to 4 weeks on and 3 weeks off with a CT scan after 2 cycles (that is every 14 weeks). My most recent CT scan 2 weeks ago showed that one of the nodules in my left lung has grown 1mm and is now 9mm in size. This is the only change noted in 28 months of sutent. So now it is continue on and see if the next scans show any further change. As for side effects - be prepared for surprises! My side effects seem to change each cycle - one time it may be hand and foot (see below), the next time it may be mouth ulcers. Diarrhea is a fairly constant problem but I have it for a day or two then it goes away for a few days then it will come back for a day or two - but I can live with it. Tiredness is a problem - I can go for a 2 hour walk or just do general housework or dig in the garden for a few hours no problem but a midday snooze is a must. Luckily my work is such that my time is flexible - I start about 5am and am usually finished by 10am so the strenuous nature of it is not prolonged and if needed it doesn't matter if I have a long break in the middle. I haven't decided if the tiredness is the result of RCC, Sutent or the fact I am now 59! Hand and foot - hands are ok just a bit tingly and sensitive around the finger nails at times. Feet - in the third and forth week of sutent my feet feel like they have lost 4 or 5 layers of skin - very sensitive - must wear shoes or walking is difficult even on carpet. Skin can peel off around the edge of my feet and in a small circle right in the middle. This is my worst problem. I think it is a circulation problem - I have recently discovered that if I lie on the floor with my feet up on a chair for half an hour a day the problem is no where near as sever. Another problem if you let it be is loss of taste and loss of appetite. I just eat. My taste is improving - maybe getting used to sutent but still could go for days without eating if I let myself. But I don't. I eat. Not big meals - I just cant eat big meals any more but 4 or 5 smaller meals a day is not uncommon. Make a normal sized meal and eat half now and half in 2 or 3 hours. If I feel like sticky date pudding for breakfast I have it! Almost all food I eat is fresh - all those numbers in processed foods give me terrible stomach acid problems so fresh food is the go and somac every couple of days. I have actually put on about 10 kilos since my operations 30 months ago. I will keep in touch. My main thought is: the Doctors job is to treat that's what they are paid to do - my job is to live! John

[maxineokeefe]

JJ - have you done much research on Chinese herbal medicines? It is not everyone's cup of tea but my husband seems to be recovering very well after taking a special combination of herbs we bought from Taiwan. We have tried so many different therapies over the past 3 years - but you can never give up hope! Good luck x

[JJ]

Hi Maxine, To a degree yes. I have been researching tradional treatments as well as natural therapies. There is so much to consider. As I have not had any therapy other than the surgery at this stage I will probably try some of the medical treatments that have now been offered to me before trying natural alternatives. I am curious though to know which herbs your husband is taking? I have a positive nature and a beautiful supportive family so I definetely remain hopeful and confident of good outcomes. Great to hear your husband is recovering well. Thanks for your post. JJ

[JJ]

Hey John, Really appreciate the detail you have provided. It is refreshing to hear an honest account of what someone is actually going through. You must be pleased with your progress and with the side effects (although not nice) not being as bad as others have experienced. I now feel much better prepared for my next visit to my specialist. Like your sign off! All the best. JJ

[deniseford]

Hi JJ I haven't been on here for a long time, so don't know where you are at at present. My hubby was diagnosed with Stage iv Advanced RCC in February 2013. He has been taking Votrient 800mg since May 2013 (nearly a year), he does get some side effects and at times they can be quite unpleasant, but overall he is doing good. He still works full time and we took a leaf out of Johns book and have been doing quite a bit of travelling, which is all manageable. So far the Votrient is working with some tumours reducing substantially and others disappearing all together. My only advice is to research and ask lots of questions, in our experience unless you ask the doctors do not freely give out information. Let us know what treatment plan you ended up going with. Take Care Denise