How are things going with you hope they are good. I was just sitting here in the sun and thought I would catch up with you again I am waiting for my husband to return home from his game of golf so sitting here is so good. I was so thrilled to hear you are going to be a Grandmother again you must be so excited to have a baby in the family does you daughter live near you so you get to give bub lots of cuddles and kisses unfortunately there are no more grandchildren for me next will be great grandchildren and that won't be happening for a while. I am waiting for the 3 months to have my next scan to see if there are any changes to the spot they found on my spine so that will happen the second week in August untill then life goes on I dont like what I'm hearing about all the side effects of these drugs I may have to take can you tell me which drug you are taking or have been taking has the worst side effect and what it does to your everyday life how sick do you feel because I can't beleive all that I read so I know you are living this and I hope you don't mind me asking if you don't want to answer I understand untill next time take care till next time
Good to hear from you & glad you're enjoying the sun. It's wonderful here, when you can get a nice place out of the wind, otherwise it's freezing. My daughter lives in Canberra, but we are going to be moving to Melbourne before the baby is born. 😞
All the drugs they use for kidney cancer have very common side effects. You may not experience many of them though. My constant companion has been fatigue, then diarrhoea, although I'm not suffering from that at the moment. Your everyday life doesn't need to change much. People say to me that I don't look sick at all. But it's the little things that take their toll on me, such as; my nose runs alot, especially when I'm eating; my fingertips & heels can get quite sore (Hand & Foot Syndrome); my voice is usually always hoarse; the lining of my nose bleeds alot; my mouth gets sensitive; the fatigue varies from day to day. Most days I'm fine to do a few things, but other times I'm really exhausted & sleep most of the day.
I think the worst of the drugs for me was Sutent (Sunitinib). It made me vomit most days & gave me quite big nose bleeds. Having said that though, everyone reacts differently so you may not experience anything like I do. Also, you can reduce the dose of the drugs so the side effects are less intrusive.
Here's hoping the spot on your spine has shrunk by the next lot of scans! Then you wouldn't have to worry.
Thankyou Budgie for that information on the side effects of those drugs I wonder how many people with kidney cancer decide taking these drugs is all to hard and give up, I suppose you live longer if you take them I will have to wait and see I am 71 years old and think whatever happens I have lived longer then some other people with cancer lets hope they discover a cure soon. Is there a reason you are moving to Melbourne you are going the wrong direction if you want the warmer weather, it is another nice day again today , my husband has gone fishing with a mate so it would be nice if he catches one . I am playing bowls tomorrow in the club mixed pairs Championships it will be a tough game but I will do my best usually I am exhausted after 18 ends with all the concentrating you have to do but I am still around and enjoying my bowls so hope it is a nice day and we win.
So take care Budgie are you moving soon ? Melbourne has good shops !!! Talk again soon.
Hi Annette46, in reply to your original message posted way back in January. I am in a similar situation. Although perhaps a bit morbid It does seem to help knowing others are on a similar journey to yours.
The left kidney was removed 18 months ago with good margins, the tumour was quite advanced and it was only by chance it was discovered. I recovered quickly and got back to work.
Six months later scans showed lymph nodes in my chest were suspect and following a biopsy sure enough it was renal cancer. A course of radiotherapy followed, once again after a period of recovery it was back to work and some form of normalcy.
Six months on and once again I was told “it’s bad news I’m afraid”. The original radiotherapy had missed one of the diseased nodes. After much thought and consultation between drains far more advanced than mine another dose of radiation was organised. With that over I have just returned to work (my employer has been very accommodating).
Obviously I have omitted so much of my story so far but I noted from the replys you received that like me there is a sence of being alone in this.
All our situations are different of course but for me at least reading others experience helps me prepare for the next six months and beyond.
I am 53 and hoping to get old with my very supportive wife, my two daughters have given us two grand children each. How greatful I am to those Doctors and specialists who have give me more of a chance to spend time with my loved ones.
I have read in your subsequent posts how you still have a fight on hand, I wish you and others on this difficult path the best of luck and the strength to fight.
Thanks for your reply. I hope you're travelling ok.
It's been a long time since I've visited this forum and yes, a lot has happened since then. I sold my house around 4 months ago and moved into a rental to be closer to family, and to ease my financial worries.
I've been on Votrient for almost 2 years now, and thanfully I've been coping with the side effects a lot better. I managed to rid myself of most other medications and it made such a big difference to my general health that I was able to return to work about 3 months ago on a part time basis. I've managed to work for around 5 hours, 4 days per week. Enough to keep the wolves at bay 🙂 I'm so very lucky to have such a supportive and accommodating employer.
It seems the Votrient has run it's couse now as my last scans showed more tumors appearing in my liver. My Oncologist has recommended Immunotherapy, specifically Nivolumab as the next line treatment. Not sure quite what to expect as far as side effects. As you no doubt understand, it's a bit unnerving when you go through the list of possibilities. Anyway, I'm determined and hopeful I can still keep working.
I very much hope this message finds you well Annette. Keep up the fight!
All the best, Steve.
Hi Steve it was good to hear from you, and you have sold your house to be near your family to get their support when needed and working even if it is only a few hours a day it all helps to fill in time and you have an income. As you know I have retired, the grandchildren keep me busy and I look forward to the weekends to watch them play sport . I just had my checkup and scans done My Oncologist says I have 3 spots on my Lungs and a spot on my stomach I he said they stable and no changes noted . So next time I see him in 6 months I hope things have not change otherwise Treatment may have to commence.?. It gives me heart to know your kidney was taken out well before mine in 2015 and different drugs can work to keep us on this wonderful earth. I wish you well Steve please keep in touch and tell me how things are going take care.
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