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Suekub's picture
Suekub
Posts: 129
Joined: Apr 2013

I have just joined this forum today. There does not appear to be anything here in Australia that offers similar experiences.

My story started in May 2011 when I had an ultrasound for occasional pain in my right side. This was immediately up with a CT scan which revealed a 20cm mass on my right kidney. Radical nephrectomy was done 4 weeks later. No mets which was fabulous and was offered a place on the SORCE trial. I believe I was on the drug for 12 months due to several side affects - hair loss, diarrhea, painful feet and fatigue. A few days after my 12 month on the drug I believe I was then taking placebo as I had immediate cessation of all symptoms. 18 month CT scan a couple of weeks ago has now revealed a lesion on my spine for which I commence radiotherapy this coming Thursday. I'm not sure of my treatment options after completion of radiation and will be discussing with my oncologist soon. Anybody have a similar experience?  

 

This cancer journey has been the most trying time and I try to stay positive for the sake of my teenage daughter who also lost her father (2 weeks before my diagnosis) as a result of metastatic melanoma. Life seems pretty unfair at the moment so would appreciate any positive stories.

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi Sue,

I live in France and was also lucky to come across this site just recently. I am sorry to hear that you have been going through so much. There are others on here who have had similar experiences to you, who will contact you to offer support

I have just had my op and have not had my results as yet. I have had a partial nephrectomy, I had cancer ten years back in the same place, so I am hoping I am done with it this time.

You will get a lot of support from people on this site, so don't go away, keep checking in for the updates.

Keep fighting

Best wishes

Djinnie

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi Sue,

I wondered how you were doing, I noted that you were starting your radiotherapy treatment today. I know you were looking for treatment options and if you feel up to it I was going to suggest you look at the postings on 'What's coming down the pike', and perhaps post on there. There are several on this site that can help with advice in relation to your diagnosis. A couple of members that come to mind are Fox and Texas.

If you have a chance I would read Fox's postings, he is dealing with a lot of issues, but always manages to inspire and encourage others.

I can't imagine what you have been through. I hope you find a treatment that is the right fit for you and i feel sure you will find the encouragement and support you need from this site.

Djinnie x

foxhd's picture
foxhd
Posts: 2029
Joined: Oct 2011

Unfortunately welcome to our group. Too many of us have and have had issues and were able to learn much interacting here. There is alot of promise and as a result many of us are doing well despite grim outlooks. As Djinnie says, read back over the last year if possible. Many frightened people and those who caught some breaks. My story atracts attention because I am fortunate to have caught a bunch of those breaks. We are always happy to share.

foxhd's picture
foxhd
Posts: 2029
Joined: Oct 2011

Unfortunately welcome to our group. Too many of us have and have had issues and were able to learn much interacting here. There is alot of promise and as a result many of us are doing well despite grim outlooks. As Djinnie says, read back over the last year if possible. Many frightened people and those who caught some breaks. My story atracts attention because I am fortunate to have caught a bunch of those breaks. We are always happy to share.

Suekub's picture
Suekub
Posts: 129
Joined: Apr 2013

Thanks for your response - 2 sessions of radiotherapy now complete, 10 more to go. I will indeed go over the posts as suggested. Will "pop in" to this site to update. All the support I can get at the moment would be appreciated. I have many friends who are encouraging but simply don't understand and don't quite know what to say or do....

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hello Sue,

I am glad you are staying in touch with this site. I know what you mean about support from friends. It is very difficult to know what to offer when it is out of your experience. I have one friend who is constantly getting embarrassed because she feels she says all the wrong things. It is easy when you call on someone who has a cold or the flu, you can reassure them that they will be better maybe tomorrow or next week. It is just a comfort to know that they are there and care about you, that in its self is very supportive.

Stay strong.

Best wishes,

Djinnie

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