My initial thought after being diagnosed was - you gotta be kidding .... I've got things I wanna do! It's all very surreal in the early stages of treatment. I'm still here almost 4 years down the track. I hope your operation went well.
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Hi Denise and Max
Congratulations on your wedding. Sounds like a great time with family camping on the beach.
Congratulations on using Votrient. It is a proactive move and like my Sutent tends to give a bit of confidence and even a crutch to keep moving forward. I am unsure about Votrient but Sutent side effects are a bit of a lottery each cycle in my case - one cycle it may be diarrhea, next cycle it may be hand and foot while the next cycle may be lethargy which affects me more. A bit of good news for Max is that my taste is now quite ok - back to normal - but my appetite is quite small so I just eat frequently. Sutent is quite toxic so I keep fairly active to get rid of the toxicity in my system - particularly in my "off sutent" weeks. My work is fairly active and on the weekends I walk about 4 kms each morning.
Congratulations on your cruise and your Canada trip. Congratulations on planning more getaways and trips. Going to work gets you up and about each day and planning trips gives you something to aim for. Like me, your role on this cancer journey is to keep living.
As for me, nothing has changed, still on sutent (currently cycle number 20). Have been pretty quiet otherwise. When I returned from Hawaii in March one of my 2 workers had lost his license so I was short staffed. But that problem has resolved itself this week so am once again looking forward to a few getaways. Peru and Machu Picchu next year is still a top priority but am considering having a couple of weeks holiday in Oz over the next month or so - perhaps Tasmania or a cruise. You never know, maybe one day our traveling paths may cross.
Keep safe. I will be in touch again soon.
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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!
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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.
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Just a few comments. As soon as cancer metastisises (spreads) it becomes Stage 4. So you can get Sutent on pbs. I have bits and pieces which they are sure is cancer in my left lung and other places around that area but they are not doing a biopsy since they believe now, that doing one may in fact spread the cancer. My oncologist says very little about "the future". My Urologist says my RCC is slow growing. He adds that the body's immune system fights the cancer for as long as it can. I have not been given a timeframe nor have I asked. I know that one day this cancer will kill me - maybe 12 months, maybe 12 years. My urologist says that 25 years may be a bit optimistic .....! But for the moment my role is to live. The doctors role is to fight it. As I said I have been on sutent for 2 years - twice as long as any other of my oncologist's patients.
As for treatment - sutent is a pill. Each cycle is 6 weeks. 4 weeks on the pill (one a day for 4 weeks) then 2 weeks off to detoxify - then a blood test to see how your body is coping then back to the oncologist for a routine visit (which I consider a waste of time). At the end of each 3rd cycle you have a CT scan to check on the mets progress. As for me after 2 years there has been little change in my mets even a possible reduction in size of one of them so I am quite positive. My oncologist has increased my detoxify period to 3 weeks so my cycle is now 7 weeks in length. Sutent comes in 3 strengths - mine is 50mg - the strongest, but if that causes you too many problems with side effects they will reduce it to 25mg or even 10mg. In fact, tomorrow I have a blood test and a CT scan before heading back to my oncologist on Wednesday. In the beginning I was edgey about getting the results of CT scans - the what ifs haunted me - but now I no longer worry - just bound into the appointment with the attitude of "See! I'm still here!"
I have outlined my side effects to you previously. Everyone is different. They do knock me around a bit, especially in the 4th week, but I just push through it. As I said I haven't had a day off work, just push through it. The 4th week tends to be survival - I sleep,go to work, sleep, eat, sleep, do a bit around the house andgenerally just keep living.
will talk again real soon
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I'm a little sad today. I flew home from Hawaii yesterday after a week of holidays during which I attended my niece's wedding. Sad because I cannot wait to get back there ( or other places on my to do list).
My story: diagnosed with RCC Stage 4 in Feb 2011. Have now been on Sutent for 2 years. Sutent I believe is the predecesser to Votrient. My oncologist has no plans for me to change - I will be on Sutent for as long as my body can handle it. As you may have guessed - I'm handling it pretty well. Similar to your husband's treatment, I had a nephrectomy and lobectomy on one day in Feb 2011. Cutting RCC out is the way they treat RCC. If it has spread they use Sutent/Votrient as an inhibitor to help prevent growth and further spread of the cancer. Being stage 4 you can get the treatment on PBS so will only cost about $35.
My philosophy: Like your reaction, diagnosis is frightening. Get information wherever you can. When you have a scan find out what all those words in the report mean (google it) Keep abreast of what is happening.
Don't fight it! That is the Doctors' job!!!!
Your job is to live.
The list of side effects is scary! From what I have learnt, Votrient side effects are supposed to be less sever than Sutent. If your doctor won't prescribe it I would consider changing doctor.
Your job is to live. 8 months after diagnosis I was holidaying in Egypt and Italy (25 days in all) while on Sutent. I don't spend much time looking at this site ... maybe once a month ... it can be an outlet but I find it a little depressing although very enlightening at times.
My work is somewhat strenuous but simple so it is all automatic for me. I have not had one day off work due to side effects of treatment in the 2 years.
As for the side effects of Sutent - my main effects are lethagy/tiredness, diahorrea, hand and foot syndrome (it feels like you have lost 4 or 5 layers of skin) making hands and feet very sensitive, loss of appetite/taste/smell, and for the first time in my life I have a pony tail .... making the most of hair while I've got it because it may fall out!
Eat! Eat! Eat! If I want sticky date pudding and custard for breakfast I have it! Forget 3 meals a day. I eat small and often - sometimes I nibble all day. I have actually put on 10 kilos since diagnosis. Peanut butter and honey on sour dough at 2 am is a regular happening with me.
My job is to live.
Have something to aim for.
Machu Picchu in 2014 sounds good to me.
I will keep in touch
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I'm so pleased that you and Kevin were able to be married and to have a little time together before he died. You are obviously a strong woman and I'm sure in time you will "come out the other end". Then, all those happy times will be remembered most.
As for me, I did it! I had a CT scan which showed no change to a couple of suspect spots in my good lung, so I was off. Last Tuesday I returned from a 25 day trip to Egypt (8 nights) and Italy (15 nights). Had a fabulous time so after my next CT scan in a couple of months I may be off again.
Doing it while I can ... please keep in touch,
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I've read the above conversations with interest. After an on-line assessment, Cover-More would not provide cover for a) any cancer and b) any other existing medical condition. So after a clear CT scan in August and after paying $488 for $20K cover (for 2 of us) and ensuring I had enough left in the bank for a quick flight home should I require it, we were off.
Just 8 months after diagnosis and having a right nephrectomy and right lower lobectomy and while being on Sutent, last Tuesday I returned from a tour of Egypt (9 days) followed by a tour of Italy (13 days). Thankfully, I didn't need that quick flight home and despite the "pace" of both Trafalgar tours I thoroughly enjoyed the whole 25 days that I was away.
And now I'm thinking "where to next"? Do it while you can!
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Up and about early as usual.
When I was prescribed Sutent, my oncologist (who I usually refer to as my "cancer doctor") also prescribed Gastro Stop Loperamide 2mg to stop diarrhoea and Maxolon 10mg Metoclopramide for nausea. I suffered neither of these side effects of Sutent so didn't use any of the tablets.
As for why I got the cancer .... who knows .... I'm male, over 50yrs, I smoked, I grew up on a farm, renovated a house and do minor mechanical work so have been exposed to all forms of chemicals including petro chemicals and probably asbestos so I fit the criteria for increased risk - but I don't think there is any actual medical proof that any of these things actually cause it. Some cancer exists in my family including my father having a kidney tumor removed (he was over 80yrs at the time). Genetics? Maybe. It is all very experimental - both the reasons why and the treatments. Sutent has only been used for a couple of years apparently, in a few more years there will be another drug.
Because I believe everything about cancer is experimental at the moment, I am not going to be foolish enough to say I am cured - I know they have "cut out" what is visible - but I believe it will come back - I won't be surprised or angry - it's my way of coping - I'm extremely fortunate that it hasn't physically affected me greatly - so I know I have time - hopefully another 20+++ years to "Do what you can" and more importantly to "Do what you want".
As for the Doctors, my "team" were also quite young. The Urologist (who I refer to as "the Kidney man") about 40yrs with the hands of a 12 yr old girl! My "lung man" was invisible - I think I saw him for a minute about 10 days before the operation! I didn't feel I needed a second opinion because the kidney man was very straight - we are going to remove the tumor but probably the kidney as well since your other kidney is fine. Because I had been a smoker much debate about the lungs - but I think kidney man eventually told the lung man to remove the lobe with the secondary tumor as I was a very fit person. I still find it odd that it was more than 2 months before I actually saw a "cancer man" for treatment.
And then in hospital there is the confusion - specialist surgeons, surgeons, registrars, hospital doctors, respiratory specialists, anesthetists .... I must have had more than a dozen doctors .... who is who .... it is a very complex society in hospitals!
Do you know what having cancer has done to me? That answer is in what I have written above. Count (if you want) how many times I have written "I".
Have a great weekend
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Hi again Jan.
I am one of the luckiest cancer sufferers I know of.
Your partners cancer sounds considerably worse than mine despite our tumors being of similar size. The pain in my back that I had when I first went to hospital was quickly relieved with panadol (liquid drip) and a saline drip to flush out the kidney because it had apparently become blocked by the tumor (hence the pain). The same pain re occurred the day before my operation - again relieved by a repeat of the initial treatment. Of course, I now have no pain because the kidney is gone. The surgeons debated at length whether to remove the kidney or just the tumor. The same debate with my lung - part of the lung or just the tumors or treat the tumors with radiation and/or chemo - eventually they decided to remove part of the lung. So here I am now, feeling terrific - even after having key hole surgery to repair a hernia 10 days ago! When I read other peoples comments on this sight I feel somewhat guilty. I am surprised surgery isn't an option for your partner. Fortunately, my cancer has all been "cut out" - the Sutent being used to inhibit any further cancer development.
So I consider myself one of the lucky ones.
But I do remember the anger when I was first diagnosed - no, not now, I have so much I still want to do ....
In my case, information = sanity. Google. Google everything - starting with any words you find in doctors reports. Google Sutent. Remember only 3% of all cancers are kidney cancers so information on Australian sites can be limited. Google "Kidney Cancer Association" - its American but their information is relevant.
In my case, I know it will come back - it may be twenty days or it may be twenty years, but it will return. I'll cross that bridge when I get to it. In the meantime, while you're getting married in October, my plans are to be touring Egypt and Italy. For one reason or another I have always put off doing things .... not any more.
Smile as much as is possible.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.