Hi, my name is Judy. I have recently been diagnosed with Renal Cell Carcinoma
Mon, 19/07/2010 - 20:37
Hi, my name is Judy.
I have recently been diagnosed with Renal Cell Carcinoma and underwent a nephrectomy last week. I also had a metastatic neck lymph node removed. I am due to see an Oncologist neck week and am petrified that she is going to suggest Chemotherapy.All the research I have done on RCC indicates that chemotherapy and radiotherapy does not work, The preferred drug of choice appears to be Sutent. Does anyone else have any experience with Renal Cell Carcinoma and its treatment?
‹ Recovering from radical nephrectomy stageIV kidney cancer without treatment ›
Wed, 13/04/2011 - 21:11
#2
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny,
We certainly do seem to be in the same boat in certain aspects.
When I was first diagnosed with a kidney tumour the Doctors thought it was Renal Cell Ca,however it turned out to be Transitional Cell Ca, with metastises to neck lymph nodes.I underwent six rounds of chemo over a four month period.They started me off wiith Cisplatin and Gemcitabine which is the standard treatment. However the Cisplatin was horrendous and I could only tolerate it for three treatments. The Doctors then changed me to Gemcitabine which is much the same amd more easily tolerated.I have since had two CT scans and there has been no spread in the cancer so I am very happy.Each day is a bit of a struggle but I feel fine and have gone back to work full time. Everyone tells you to stay positive but sometimes it is very hard.Let me know if I can help you anymore
Thu, 14/04/2011 - 19:38
#3
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
Thanks so much for your prompt reply.You are the only other person I have been able to find whom has the same type of cancer as me.
I also have lymph nodes affected and removed. I have to have another operation very soon to remove my ureter and possibly more nodes. As I had a rib removed when the kidney was removed, recovery has been much slower than I anticipated and that gets me down a bit. I am mostly positive in my outlook but also realistic and know that I have a long way to go yet.
I am to have chemo after the next operation, and not looking forward to that.
Itwasgreat to read that you have no spread of the cancer since your chemo. That makes me feel optomistic about my future.
How often do you have to have CT scans? I would imagine regularly for a while?
My Doctor does not give me a lot of information and Iam left with lots of questions in my head after seeing him. We live in a rural area and the doctors are all so busy here.
So pleased to hear from you. Thankyou I know I am not alone!
Fri, 15/04/2011 - 18:47
#4
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny,
Glad to hear that I was of some help to you.I forgot to say that I too had my ureter removed as well as my kidney.I had a visit with my Oncologist yesterday to show him my latest scan. He was rather pleased with the results. He did say that this type of cancer can stay dormant for many years before it rears its ugly head again,so that was good news.Transitional Cell Ca is basically a bladder cancer so that is what they keep referring to it as. I know what you mean by the lack of information out there. All the forums were of people with Renal Cell Ca or those that did have Transitional cell,they did not have any metastases.I have scans every three months,which is the the norm for the first twelve months and every six months after that. The scans are a bit of a pain actually because having only one kidney they have to give you IV fluids beforehand to prevent any damage to your existing kidney and to get a better result,so the whole process takes alot longer.Let me know if you need more information
Regards
Judy
Fri, 15/04/2011 - 20:07
#5
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
Thanks for your reply. I was very interested to hear about your Oncologist saying that this type of cancer can lay dormant for many years. I guess each CT scan is a tense time awaiting the results.
I had a scan on Monday and see my specialist next Tuesday to find out when I have to go back to hospital to have the ureter removed.
Did you begin chemo soon after your op or did you have to wait a while?
I had part of a rib removed with my op and that has been giving me hell. It seems to be taking forever to stop hurting.
It is nearly 12 weeks now and I still run out of energy very quickly.
I will be glad when next Tuesday comes and I find out where I stand.I think the pressure of not knowing is worse than knowing At least I can come to terms with the known facts.
I am really pleased that you have a good result from your scan. You have given me some confidence that a good outcome can happen.
Regards
Jenny
Fri, 15/04/2011 - 20:41
#6
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny.
I had to wait a month or so after my operation to start chemo, mainly because they were not sure whether the malignant lymph nodes in my neck were the same type of cancer (TCC)as in my kidney.The Doctors were hoping that it was a different type of cancer which meant that the cancer had not spread from my kidney.Apparently it is uncommon for a kidney cancer to spread to the neck.Unfortunately after having another operation it turned out to be the same.I imagine you should start chemo pretty soon.I am very anxious about a week or so before having the scan and then having to wait another day before getting the results. In a way I am lucky, as I am a nurse and can mostly understand the jargon.As I mentioned before the chemo is pretty horrible.The worst side effect is the nausea,however they do give you alot of drugs to help prevent it. I f you cant cope with one type of chemo drug tell the Doctors and they can give you something else. I was about to give up on the treatment altogether until they changed me to another drug.The tiredness is another thing you have to cope with.It has has been four months since my last treatment and I still get pretty tired.I did not lose all my hair although it did thin alot.I guess it is all worth it in the end. I do hope everything goes ok for you as you seem to have been through alot
Mon, 18/04/2011 - 17:46
#7
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy ,
Thanks for your reply. I appreciate hearing about your experience with the chemo and lymph nodes. It seems we each have slightly different variations of the same cancer.
I have been toBendigo for 3 days attending my nephews wedding, and found I got really tired listening to conversation and keeping up with the crowd. Life certainly changes with cancer and I wonder if I will ever get my old stamina back.
I see your friend request on my email and would like to be your friend. I just cant work out how to confirm it on this site. So be patient. I will find out how to confirm it eventually.
I see my doctor tomorrow so will find out what the next step is then.
Talk to you soon. Keep well
Regards Jenny
Thu, 21/04/2011 - 01:01
#8
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny,
How did you go at the Doctors,I hope he had some positive news for you.I can understand your tiredness,it seems to be the main complaint for all of us.I do think that it does get better somewhat.I forced myself to go back to work and that was my salvation.It gave me something else to think about and make me feel as though I had my old life back again.The one thing that I do find upsetting is that people seem to think you are cured of cancer because you dont look sick.I guess it may sound strange but I hate being at home alone on my days off,mainly because it reminds me of the six months I was more or less housebound while having chemo.
Did you work before your diagnosis?
Anyway do let me know how you got on at the Doctors
Regards
Judy
Thu, 21/04/2011 - 16:17
#9
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
I can identify with your comments on your last message. People do think that because we look good we must be cured of cancer. There are some strange ideas floating around out there. I guess that for someone who has never had cancer or family with it, it is hard to understand. I am learning more each day myself.
I am retired from the workforce. I retired at 55 and have been an avid lawn bowler since then, so really miss my bowls and being involved in the club. Friends keep me informed so I have some contact still.
My visit to the doctor was both bad and maybe good news. I won't know until I have been to see an Oncologist at St Vincents Hospital in Melbourne early in May. We live 3 hours from Melbourne so I hope chemo can happen closer to home.
It seems I have a new largish tumor growing on a lymph node up against my aorta. My doctor does not know if it is the cancer or if it may be a sac of fluid that has developed since my nephrectomy 12 weeks ago. If it is only fluid that will be wonderful as nothing else is showing on my scan. Once again it is a waiting game to find out where I stand.
I can understand you enjoying being back at work. I like to do things that make me feel normal too. It is nice to forget for a while. Though I have come to terms with my situation and am adapting my interests to things I can manage to do in a short time before my energy runs out each day.
Great to hear from you
Regards Jenny
Sun, 01/05/2011 - 11:08
#10
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
I hope you are keeping well and enjoying being cancer free.
I see my Oncologist tomorrow in Melbourne, so hopefully I will find out where I am at with this new tumor.
My energy is increasing a little now, so I can get out and about more.
I have a friend who has just been diagnosed with bowel cancer. It seems to be all around us. I guess we notice these things more now
Keep well
Regards Jenny
Tue, 03/05/2011 - 19:33
#11
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny,
Let me know if you received my last message,as I think it got lost somewhere out there.
Regards
Judy
Tue, 03/05/2011 - 21:12
#12
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy, I am not sure if your last message got lost. The last one I had from you was on 21st April.
I visited my Oncologist yeasterday. A 13 hour round trip to Melbourne and back, but the good news is I am able to have my chemo
just an hour from home .
I begin chemo on thursday . Only one day a week to start with and probably for a period of 3 months. I guess that could change depending on the results of my next CT scan.
I found out that my cancer is classified as stage 3 , not stage 4 as I had thought so the odds are somewhat better than I had become resigned to.
I am feeling quite well now so hope that gives me a good start with the chemo. I will just have to find out like everyone else how I am going to handle it.
I hope your good health is continuing. I think of you often as we have the connection of being in the same situation.
Best wishes Regards Jenny
Tue, 03/05/2011 - 21:26
#13
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Dear Judy,
Your last message arrived on my email inbox not 2 minutes after I posted the above message to you.
I hope your chest cold clears soon. Yes I can imagine your concern about your lungs. I think we will be forever thinking the worst every time we get an ache or pain or twinge.
I have another suspected growth on a lymph node near my aorta,which I hope the chemo will reduce. Not certain if it is more cancer or fluid from my last operation.
All the best , talk again soon, Jenny
Sat, 07/05/2011 - 19:56
#14
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny,
Glad to hear of your good news and pleased that you will be able to receive chemo closer to home,as it can be quite draining.Hopefully you will get through it OK. Everyone is different.Your regime is different to mine though,I guess Doctors have different ideas. Keep me posted as to how you are going
Judy
Mon, 09/05/2011 - 13:46
#15
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
Well I am emerging from the effects of my first day of chemo.I found day 3and 4 very nauseous so took my little white pills and managed to sleep through most of the day and night.I think constipation is my next problem, but working on that. Mouth ulcers came and went in 24 hours but I suspect they will emerge again after my next chemo next thursday.
There is a brand new Oncology Unit to be opened in July where I have my chemo. The current building is very small and crowded so any sort of privacy is impossible, even using the commode! I guess we can get used to just about anything if we need to!
I have had some friends visit me today ,which is nice but I ask them if they have colds before I let them in. Did you find you had tom almost isolate yourself from the world for fear of infection?
Have you recovered from your chest cold.? I can imagine you worrying that it could be a lung cancer. I think we will have these fears as part of our lives forever now.
We have a beautiful day here today, so I give thanks for that and intend to enjoy every minute of it.
I look forward to your comments each time we talk. Keep Well
Your friend Jenny
Mon, 09/05/2011 - 19:04
#16
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny
Glad to hear you have started your chemo at last. Unfortunately it does not come without side effects,nausea being the main one.I was given Emend for three days which got me over the worst part and then I was on my own with the exception of the little white pills which I found did not work too well.Ifound sipping ginger ale/beer quite helpful.I suffered quite badly from constipation despite taking a multitude of aperients.Fortunately I did not have a problem with mouth ulcers,although alot of people do.I think the first round of chemo is the worst as you do not know what to expect.I was not too troubled about getting an infection as I was pretty much self isolating except for visits to the shop.I felt too tired and sick to see anyone or go out.Saying all that it is amazing how well you recover after treatment has finished.I still have days when I feel really tired,but not so bad for me to take time off work.Do you know which chemo drug/s you are having?
It was my birthday last week and my family gave me tickets to see Andre Rieu on Saturday night,so I am looking forward to that.I still have a bad chest.I do suffer from emphysema as well and so everytime I get a cold it stirs things up,so hopefully that is all it is.Actually my oncologist was not going to do another scan for four months,however I think I will ask to have it done sooner just to make sure
Anyway Jenny take it easy and get lots of rest.It will all be over soon and hopefully seem like a bad dream
Judy
Mon, 09/05/2011 - 19:04
#17
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny
Glad to hear you have started your chemo at last. Unfortunately it does not come without side effects,nausea being the main one.I was given Emend for three days which got me over the worst part and then I was on my own with the exception of the little white pills which I found did not work too well.Ifound sipping ginger ale/beer quite helpful.I suffered quite badly from constipation despite taking a multitude of aperients.Fortunately I did not have a problem with mouth ulcers,although alot of people do.I think the first round of chemo is the worst as you do not know what to expect.I was not too troubled about getting an infection as I was pretty much self isolating except for visits to the shop.I felt too tired and sick to see anyone or go out.Saying all that it is amazing how well you recover after treatment has finished.I still have days when I feel really tired,but not so bad for me to take time off work.Do you know which chemo drug/s you are having?
It was my birthday last week and my family gave me tickets to see Andre Rieu on Saturday night,so I am looking forward to that.I still have a bad chest.I do suffer from emphysema as well and so everytime I get a cold it stirs things up,so hopefully that is all it is.Actually my oncologist was not going to do another scan for four months,however I think I will ask to have it done sooner just to make sure
Anyway Jenny take it easy and get lots of rest.It will all be over soon and hopefully seem like a bad dream
Judy
Thu, 12/05/2011 - 22:08
#18
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
Sorry about the slow reply. I have had a few ups and downs and not up to looking at the computer screen.
I had a real battle with constipation but have that sorted now I hope as it was agony and very nauseous making.
Had another lot of chemo today and all is very well. My blood levels are good and I feel fine tonight. I suspect they put something in my drip to pep me up.
The chemo drugs I am having are called Gemcitabine and Cisplatin. The Gemcitibine is supposed to be harder than the Cisplatin to cope with I will find out in the next few days.
I tried your hint about sipping ginger ale and it works very well.About 1 can a day keeps me going.
I wish you a very happy birthday for last week and hope you enjoy your Andre Reiu Concert. We have some of his DVDs and enjoy them thoroughly.
I mentioned to the Nurses in our Oncolgy ward about how good it was to have you to talk to and they said they will tell others about the Cancer Connect Web site. It is amazing how few people know of the WebSite or even about the Cancer Helpline. They are missing out on a lot of support
Hope your chest cold is clearing and gives you some peace of mind
Bye for Now
Your friend Jenny
Fri, 13/05/2011 - 03:41
#19
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny,
It is 2am in the morning and I have been awake for hours coughing so thought I would turn on the computer.Glad you appear to be getting through your chemo ok I was on the same drugs you are having however
it was the cisplatin I couldnt handle.It is a very poweful drug and I had to stop it.They switched me to carboplatin which I was able to tolerate much better,The doctors admitted that it is a very hard drug to take,so if you can take it that is great.Everyone is different I guess.
It is understandable that you dont feel like doing anything. I remember I preffered to sleep alot and that way I didnt feel sick.It really is unfair that we all have to go through this.
I stumbled on this site by accident,in fact it was my son who found it.Some comments I found helpful,others very depressing.How is your hair going? Mine is starting to get thicker again but it is taking a long time.I used to colour my hair before treatment,but they advise you against it for at least six months.
Any way Jenny I am going back to bed now as I have to work in the morning.
Thinking of you
Judy
Sat, 21/05/2011 - 21:20
#20
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny
Just wondering how you are going as I havent heard from you for a while. I have just learnt that one of my close friends from work has just been diagnosed with kidney cancer. Sadly it has already spread to her bones.It never seems to end does it.
Judy
Tue, 24/05/2011 - 20:57
#21
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
I have just returned from 4 days in Mildura so just read your message tonight.
I am very sorry to hear about your friend with kidney cancer that has gone to her bones. There is alway someone worse off than we are. Is hers TCC too.
I had a Palliative care Nurse visit me this week and I felt very strange about it, almost indignant because I think Palliative care is for people who are dying, but then I realized that my odds are only about 30% of survival over 5 years and I realized that maybe it was appropriate after all.
I begin my second round of chemo on thursday, Cisplatin this time so expect to be out of it for four or five days again. The gemcitibane never effected me at all apart from giving me a voracious appetite. At this rate I will weigh a ton.
Has your cough and cold cleared up yet? I hope so.
Well I must go and get some beauty sleep. Keep well
best wishes ..... Jenny
Tue, 24/05/2011 - 20:57
#22
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
I have just returned from 4 days in Mildura so just read your message tonight.
I am very sorry to hear about your friend with kidney cancer that has gone to her bones. There is alway someone worse off than we are. Is hers TCC too.
I had a Palliative care Nurse visit me this week and I felt very strange about it, almost indignant because I think Palliative care is for people who are dying, but then I realized that my odds are only about 30% of survival over 5 years and I realized that maybe it was appropriate after all.
I begin my second round of chemo on thursday, Cisplatin this time so expect to be out of it for four or five days again. The gemcitibane never effected me at all apart from giving me a voracious appetite. At this rate I will weigh a ton.
Has your cough and cold cleared up yet? I hope so.
Well I must go and get some beauty sleep. Keep well
best wishes ..... Jenny
Wed, 25/05/2011 - 18:43
#23
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Jenny,
It was good to hear from you.It is great that you are able to get away
for awhile and hopefully enjoy yourself before having to come back to the grind of chemo.What is your chemo regime?I would have Cisplatin and Gemcitabine one week followed by Gemcitabine only the following week.Then I had a break for a week before it all started over again.
The Cisplatin was a real pain as it takes so long to give,so I was happy when they changed me to Carboplatin which is given over an hour.
I would not be too concerned about being seen by the Palliative care nurse. They do not only offer services to the dying but try and improve quality of life in those who are undergoing chemo etc.I always remember my Oncologist saying that I was not curable but treatable.so that was some small comfort.I was initially told that I had two years,but that was before chemo so hopefully that time limit might be extended. The trouble is you dont know when this thing will come back again.My cough is still hanging around which is a bit of a worry. I am due to see my Doctor in a few weeks so I will discuss it then. My friend had her kidney removed today. I dont know if it is RCC or TCC but will find out soon I guess.I think she will have to have chemo and radiation for the mets in her bones.Anyway she has a long journey ahead of her.I dont think the whole thing has registered with her as she said she wants to be back at work in six weeks.
Anyway bye for now will talk again soon
Judy
Sun, 29/05/2011 - 12:47
#24
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
Good to hear from you again.
My chemo regime sounds much the same as yours was. I was unable to have the scheduled Cisplatin this week because my kidney function was not up to scratch, so I only had gemcitabine, which doesn't effect me too much. The chemo Nurse said we will try the Cisplatin again next cycle if my kidney has recovered enough, however I am feeling unsure about that as I really do not want to risk my only kidney. Maybe another chemo can be used. I intend to discuss it with them on my next day on thursday.
I am finding being isolated from social activities a bit trying, but I know it is too risky to catch a cold with my blood levels so low. Apart from a lot of sleeping I am doing patchwork and sewing and some very slow housework. Being so weak is a drag as I have always been very active with sport and other activities. However, I guess all this is in a good cause(I hope).
I hope your friend is recovering well from her op. Yes, she is being very hopeful, saying she will be back at work in 6 weeks. I said that about Bowls, and now I realize it could be a year or more.
I hope your cough is clearing up. It is a hard time of year to get rid of colds. I don't know where you live, but here in Victoria it is very cold and foggy. I try to walk the dog every day but today is pea soup fog so cannot risk it.
We hope to have another few days away in our caravan after my next chemo.
Look after yourself
Your friend Jenny
Sat, 25/06/2011 - 16:02
#25
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
Sorry about the long silence. I have been very unwell and just unable to focus on the computer. You are correct about the Cisplatin. It is horrible stuff!!! The last round made me very ill and before I could get over that, I had more Gemcitibane which knocked me again.
I have a CT Scan this coming week and then a review with my Oncologist so really hope I can have a break from the chemo. It takes everything away from you and you begin to wonder if it is worth it.
I hope your cough has cleared up by now, and that you are keeping well. I remember you said that you had to see your Oncolgist again so hope that went well.
How is your friend from work who had her kidney removed? She has a long road ahead too. I have been 6 months now since it all began and it seems much longer. You must be over 12 months now.
We had a short trip away in our caravan. I seemed to sleep most of the time, but it was a change of scenery anyway and good for my husband to get away from housework too.
Our weather has been woeful for weeks, but a bit of sun is showing through today. It makes things look better.
I too, have been suffering a bit of depression. I think the effects of the chemo and drugs causes it. It is hard to be cheerful when you feel like a zombie
Hope to hear from you soon.
Your friend Jenny
Thu, 20/10/2011 - 20:13
#26
Re: Hi, my name is Judy. I have recently been diagnosed with ...
Hi Judy,
I hope you are OK as I have not heard from you for a good while now.
I have had trouble accessing this page , but have managed to find it tonight. There is no record of my last few messages on it so I don't think you would have received them
I replied to your comment about people thinking you are fine because you are back at work. I think you are amazing to be at work at all. I just deon't have much energy anymore. I think it is a by product of the chemo.
I have to go into hospital for exploratory in my bladder. Life is an endless round of scans and hospital visits isnt it?
I hope you are well and it isnt all getting on top of you.
I think of you often and wish you all the best coping with work
Hope to hear from you soon
Jenny
Hi JUdy, I recently had nephrectomy too also included 2 lymph nodes and tumor on the aorta. Mine is transitional cell carconoma so is different type from yours, but we seem to be in the same boat.
I have more surgery coming up and then chemo.
I am having trouble finding information about all the possibilities