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Garry P's picture
Garry P
Posts: 8
Joined: Nov 2017

Good Morning All and greetings from Canada!!

This is my first post so please forgive me if I break any rules or protocol I came across this page after researching and looking for answers/direction. To sum up my treatment so far.... I have recently been diagnosed with sarcomatoid metastatic renal cell carcinoma  with mets in my 7th rib (confirmed after the pathology of my right kidney and mass)

 

a.    Ultrasound discovers large mass on right kidney

b.    CT scan 24 August 2017

c.    CT Scan 12 September 2017

d.    Full body/bone scan 18 September 2017

e.    Radical nephrectomy (right kidney) and tumor  ( size of a football) removal 13 October 2017

f.    Pathology report states Furhman grade G4 although final diagnosis is pT2b pN0

g.    Radiation to commence shortly using stereotactic radiosurgery CyberKnife)

 

g.    Chemotherapy to commence upon completion of radiation treatment

 

My onclogy team do not want to start chemo (Sunitinib Malate/Sutent) until after the SRS is complete and the cancer reappears ( I believe that they do not want the cancer to build up an immunity to the sutent)...  I am realistic in the knowledge that both kidney cancer and teh bone mets are very difficult to treat and that the sarcomatoid is a very virilient form of cancer. I have also requested to be considered for any clinical trials that may  become available. 

 

I have read a lot about this subject and I guess what I am hoping for is any first hand experiences or information that may help me in my recovery.

 

Thanks in advance

 

Garry

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

So sorry for your trauma

Hold tight many good people on here who can advise

Garry P's picture
Garry P
Posts: 8
Joined: Nov 2017

... thank you

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Greetings fellow Canadian! I hope you get the answers you are looking for. I wish you all the best!

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Hi Garry, and welcome! My tumor was clear cell RCC, but with sarcomatoid features, so it was more aggressive than normal clear cell RCC. I've also been (almost fully) dx'd with mets - 2 lung nodules - we're waiting for confirmation testing with my original sample to be 100%. I think that among the important things will be regular scans - at least every 3 months, considering the sarcomatoid tumor. I hope your subsequent treatment goes well and you're able to get rid of those pesky mets. You'll find some incredibly helpful folks here - there's a lot of collective knowledge and experience about kidney cancer - so be sure to check in with us and ask whenver you have questions. We're all here to help each other!

Gary (spelled the 'right' way! ;-) )

lobbyist0724's picture
lobbyist0724
Posts: 466
Joined: Sep 2016

Hi Garry, I am a Canadian too! I am so sorry that you have to join this club but glad that you found us. I also want to suggest you to join Kidney Cancer Canada and post your situation there. We recently had a member who is having stage 4 rcc and multiple met including brain met. He is now in a combination therapy trial and is doing well. Thre is also another member with stage 4 rcc who has been NED for at least 6 years after the treatment! Also, the treatment available can be very different between US and Canada too. So please join KCC for more advice.

Here is the link http://www.kidneycancercanada.ca/member-area/forum/kccforum.aspx?g=mytopics

Garry P's picture
Garry P
Posts: 8
Joined: Nov 2017

Thank you  I have already joined KCC I may I wish you  safe journeys through life

icemantoo's picture
icemantoo
Posts: 3350
Joined: Jan 2010

Nice to see a fellow Garry, but I wish we did not have to get Kidney Cancer to meet. I grew up North of (yes, North) of Canada in Detroit. Directly South of us was Windsor, Ontario. Those on here with tougher Journey's will chime in as well. Sending good Karma.

 

Garry a/k/a Icemantoo

 

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

My situation has some similarities to yours -- in terms of general size (yours wins over mine, though) and grading.  The surgery included removal of an adrenal gland and 20 or so lymph nodes.  I don't think I have the sacromatoid type.  I'm not up on the significance of that.  For me, surgery was almost 5 years ago.  I went in on an Everolomus trial right after surgery.  Recurrences at about 18 months and 30 months.  Treated with targeted radiation, Sutent and Votrient.  Current things are going well.  For me, the radiation was effective.  Sutent worked for a while and now Votrient has been my pal.

People vary on the idea of trial participation -- some go for it, some recommend staying away from trials.  I have no regrets about joining the study.  Beyond that, I think treatment effectiveness has increased over recent years and, although we're obviously in a dangerous position with our health, we can have hope that there might well be many good days ahead for us.  Stay positive and continue your involvement in your treatment options.  

Prayers and best wishes to you.

Dutch

 

Garry P's picture
Garry P
Posts: 8
Joined: Nov 2017

To all of you  that welcomed me so warmly... a sincere than you.... I will keep you all up to date on my journey.

 

Garry

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

Please keep coming back. The old regulars sometimes Dip in and out and you will get support here from people who know you he system

I wish you the best. 

Annie

Garry P's picture
Garry P
Posts: 8
Joined: Nov 2017

Just finished my second radiation treatment..... all good although struggling with managing

the breakthrough pain.... standard daily dose is 2 Percocet 4 times a day, with 1mg of morphine

as required... I see my oncologist later this week and will discuss then

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

Sorry about your pain. I hope all goes well for you.

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

I am curious about bone mets. I had a radical nephrectomy on Dec 5th with a bone scan two days before that came back clear. Since then however I have been experiencing a dull pain in my right thigh. My tumor was stage 2 but grade 3. 

Could something spring up that fast to where it would be painful already? My husband thinks I'm paranoid and it is just because I'm a lot more active now... 

Anyways I just want to say thank you to everyone here. I cannot tell you how big of a help this site has been for me.

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

Hi C'girl,

I don't think you need to worry.  If something is too small to show up on a scan then how can it cause a pain?

I actually have a small problem with my right thigh and maybe the hip. I think it is related to weight plus a pinched nerve. If I stand for too long my thigh starts to go numb. I've been heavier and lighter than I am now and it is worse when I am heavier.

I had this issue before my cancer diagnosis. When I found out I had kidney cancer I started having the same thoughts you are having. When I had the bone scan I half expected something bad to show up. But it came up clear so I could stop worrying.

You'll want to slap me for saying this, but it is helpful to learn to not worry so much. I don't know how to do that but maybe some meditation or relaxation techniques might help. You'll be getting regular follow ups in future and they are always anxious times. Anything you can do to offset anxiety will be of great benefit.

Steve.

Cinnamongirl's picture
Cinnamongirl
Posts: 199
Joined: Jan 2018

Thanks Steve, I am just at that stage where everything is a "thing".. lol

 

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