Renal Cell Carcinoma

[deniseford]

Hi I am new to this site and was after any information or support I can find. My husband(55) was diagnosed with Renal Cell Carcinoma in August 2009....he had a 1kg tumour in his right kidney and had a radical nephrectomy. We were told post surgery even though it was an agressive cancer it had not spread outside the kidney. Five days prior to the cancer he had his first symptom (they thought he had kidney stones). We thought we were home free and were thankful for how lucky we were. In July 2011 during a scan of his heart they found a 1.5cm nodule on his lung....after a biopsy they found it was RCC and had metatisised. He had surgery to remove a lobe from his left lung...once again, the surgeon was very positive that we had got it early enough and all should be good. In November 2012 during a regular scan they found another 1cm nodule on his right lung and he once again had surgery to remove a wedge section from his right lung. We were now scared and have since found you have to ask the right questions as noone offers the information. He had his 3 month check up in middle of February and we were hit with the news that his cancer is Stage IV and has been for 2 years...surgery is no longer an option, we were given a timeframe...I still cannot get my head around it. The only option left to him is a drug called Votrient...we have been told that they wont start him on it until the cancer is even worse and then it will be just to prolong his life. I would like to hear from other people who have used or are using this drug. We are trying really hard to just live our lives normally....you go through so many emotions....I am scared, angry, sad and then I feel guilty and selfish for feeling like this as he is the one that has to live with the knowledge that time is short.

[talljohn]

Hi Denise, 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 John

[deniseford]

Hi John It was great to hear from you....though I do wish it was under different circumstances. Getting your response has been a great inspiration to us.....there is life after such a terrible diagnosis. You have helped answer a lot of questions....since I last posted we have talked lots & lots about what is happening and going to happen. We are now focused on the here and now...not 6 months from now. Our current goal is a months holiday in Canada in July with our daughter....lots to plan and we are now quite excited...something good to focus on. As for the doctors, we have started asking lots of questions, and by taking this proactive approach helps greatly to deal with it all. My husband had an appt with the oncologist last week, she was not available so they had an other doctor (who normally dealt with women with breast cancer) see us....every question we asked was responded with "I don't know, this is not my field of expertise" this to start with begged the question why she was filling in. Then she hit us with bad news...she even received a second opinion...his recent xray showed fluid on the lungs and they were booking him in straight away to start him on Sutent. We were pretty upset....we then asked to see the Xray and the comparison Xray....to our confusion they looked identical...we questioned this (pretty sure the doctor was getting annoyed with us by now...even told us most of her patients didnt ask anything....just in and out like cattle) her answer was she would discuss this with the other doctors. We decided to be proactive and took the Xrays to our Radiologist for a second opinion...hence we found out there was no difference between Xrays and it wasn't even fluid on the lungs. NOT HAPPY JAN was an understatment....his regular onconologist was very apolegetic about the confusion and has agreed that we can wait a bit longer before we start on the drugs. I think it is time for a new Oncologist!! In the meanwhile we are focusing on living and enjoying every moment we have!! I look forward to year about Machu Picchu. Denise

[talljohn]

Hi Denise, 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 John

[deniseford]

Hi John This has been one roller coaster year. Max was put on Votrient in May as a CT Scan had shown the tumours had grown as well as 'multiple new ones'. He was put on the full 800mg dose, he has had some of the more common side effects: diarrhea, lethargy, white hair, nausea, taste. He takes other drugs to help with the side effects. He too has not had one day off from work (only when we go on holidays). The side effect he hates the most is the taste, he luvs his food (he is a chef) and can't stand that he can no longer taste things properly. We have taken your advice and kept on living....we went on a cruise for 7 days to the South Pacific Islands, we went for our trip to Canada, absolutely luved it and have now planned to go back for Xmas 2014 so we can see it in Winter. We got Married (this was a big one)and went camping on the beach with the family for our honeymoon. We are planning to spend Xmas at Rainbow Beach and I am busy organising our Cape York or Bust 2014 4WD adventure (this is top of Max's 'to do list'!!! Overall the Votrient has been good for him, his last scan showed a reduction in the tumours and no new growth. He did have to go off the Votrient for a couple of weeks as his Liver Bloods were extremely high (due to a course of antibiotics he was on). Now his bloods are back to normal he is back on the Votrient at a reduced dose 600mg. Would luv to hear how you are doing, and what adventures you have in store. Cheers Denise

[talljohn]

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. John.