My Husband has stage 4 M RCC, about to start Sutent

banddinbc

My husband has not been on this site yet,  I have searched for information and came across your support group which has been the first positive place I have found

we are just new on this journey and as yet have sitill to complete his right kidney surgery.  most of the medical terms I am not familiar with but will in time I am sure learn more

after his radical nephrectomy histopathology report is stage pT3aNO--can anyone exp;ain what this means.  He is today Feb 24 on his 12th day of Sutent and is doing alright as side effects havent as yet appeared--he is on 4wks @ 50mg then 2 wks off.

 

 

Texas_wedge

Medical terms

B, welcome to you and to Don, when he chooses to join us.

The fastest way to learn is by asking questions and no questions are regarded as silly here, so ask away!  None of us here is an RCC expert and we are all learning as we go along.  It's pleasant to do it together by pooling what we're discovering and making new friends at the same time.

pamheld

Kidney Cancer Online List

Hello - you and your husband may want to join the mailing list run by ACOR - the Association of Cancer Online Resources.  They have an extremely active and knowledgable group of patients, providers and caregivers.  The information I've gleaned there over the years (I'm an 11 year survivor) has been valuable.  Here's a link to join if you would like to check it out.  You can subscribe for individual e-mail messages, or as I do, subsribe in digest mode, where you'll get one e-mail a day with that day's messages.  If you prefer no mail, you can search and post messages online, as well as search the archives.

We are our own best advocates, so its important to educate yourselves as much as possible with credible information.

I wish you both the best of luck!

https://www.acor.org/listservs/join/72

Regards,

Pam

Texas_wedge

pamheld said:

Kidney Cancer Online List

Hello - you and your husband may want to join the mailing list run by ACOR - the Association of Cancer Online Resources.  They have an extremely active and knowledgable group of patients, providers and caregivers.  The information I've gleaned there over the years (I'm an 11 year survivor) has been valuable.  Here's a link to join if you would like to check it out.  You can subscribe for individual e-mail messages, or as I do, subsribe in digest mode, where you'll get one e-mail a day with that day's messages.  If you prefer no mail, you can search and post messages online, as well as search the archives.

We are our own best advocates, so its important to educate yourselves as much as possible with credible information.

I wish you both the best of luck!

https://www.acor.org/listservs/join/72

Regards,

Pam

KIDNEY_ONC

And, if you'd like more detailed guidance, look at this thread, here, entitled ACOR - how to join lists, such as KIDNEY-ONC, RARE CANCERS, CHROMOPHOBE-RCC, CANCER-DEPRESSION, CANCER-FINANCE, CAREGIVERS, to be found at:

http://csn.cancer.org/node/247312

It's more expert and intense but less cosy and humorous than CSN so you might want to be involved in both, as many of us here are.

banddinbc

Texas_wedge said:

Medical terms

B, welcome to you and to Don, when he chooses to join us.

The fastest way to learn is by asking questions and no questions are regarded as silly here, so ask away!  None of us here is an RCC expert and we are all learning as we go along.  It's pleasant to do it together by pooling what we're discovering and making new friends at the same time.

thanks for the welcome

we are learning lots and welcome this forum to meet and welcome new acquaintances.  Next week is Dons surgery for his kidney so our focus is on that for now then next step of chemo in the near future.  so nice to be here andlearning, the support is fantastic I have been a browser for a few weeks but will be back  regards    Bev

 

banddinbc

pamheld said:

Kidney Cancer Online List

Hello - you and your husband may want to join the mailing list run by ACOR - the Association of Cancer Online Resources.  They have an extremely active and knowledgable group of patients, providers and caregivers.  The information I've gleaned there over the years (I'm an 11 year survivor) has been valuable.  Here's a link to join if you would like to check it out.  You can subscribe for individual e-mail messages, or as I do, subsribe in digest mode, where you'll get one e-mail a day with that day's messages.  If you prefer no mail, you can search and post messages online, as well as search the archives.

We are our own best advocates, so its important to educate yourselves as much as possible with credible information.

I wish you both the best of luck!

https://www.acor.org/listservs/join/72

Regards,

Pam

ACOR

Thanks Pam I have been checking it out. slowly learning some of the language took a bit to realize everyone meant Renal Cell Carcinoma as RCC,  so much to absorb but we are getting informed, although we are mostly focused on the surgery upcoming on tuesday, Don has heard the results to date but also is slow to search out answers so I am trying to get informed to support and inform when he is ready

:  Bev

 

 

.happy trails

alice124

banddinbc said:

ACOR

Thanks Pam I have been checking it out. slowly learning some of the language took a bit to realize everyone meant Renal Cell Carcinoma as RCC,  so much to absorb but we are getting informed, although we are mostly focused on the surgery upcoming on tuesday, Don has heard the results to date but also is slow to search out answers so I am trying to get informed to support and inform when he is ready

:  Bev

 

 

.happy trails

You and Don

Bev,

I am so sorry you and Don have found the need to join this group, but--in my biased opinion--CSN is a good training ground. The technical support and latest medical jargon may not match ACOR, but in October 2011 I found myself in a similar situation as you are experiencing with your husband, and this is the place that nurtured me through to where I am now and continues to do so. Still don't know a lot, but a lot more than when I started. And when I need to find out something specifically, I know where to go.

My husband too was not ready to post or get directly involved on CSN in the beginning, but he has come around gradually. We all learn at our own speed (and perhaps it's on a "want to" self absorption  basis). Yes knowledge is power, but support, kindness, understanding, laughter  and love that emanates from this board are what provide strength to move and focus on the  more difficult medical conversations.  

Bless you and Don. Come back often -- vent, laugh, ask, tell jokes -- all welcome here!

banddinbc

alice124 said:

You and Don

Bev,

I am so sorry you and Don have found the need to join this group, but--in my biased opinion--CSN is a good training ground. The technical support and latest medical jargon may not match ACOR, but in October 2011 I found myself in a similar situation as you are experiencing with your husband, and this is the place that nurtured me through to where I am now and continues to do so. Still don't know a lot, but a lot more than when I started. And when I need to find out something specifically, I know where to go.

My husband too was not ready to post or get directly involved on CSN in the beginning, but he has come around gradually. We all learn at our own speed (and perhaps it's on a "want to" self absorption  basis). Yes knowledge is power, but support, kindness, understanding, laughter  and love that emanates from this board are what provide strength to move and focus on the  more difficult medical conversations.  

Bless you and Don. Come back often -- vent, laugh, ask, tell jokes -- all welcome here!

Got the surgeries behind us - thankfully

 

Don completed his radical nephrectomy of his left kidney on January 18, and has done well in his recovering, being a laproscopic procedure we understand makes it a much easier recovery.  He has not had a lot of pain and so is coping well.  although he finds himself to be short of breath for odd times, blood pressure is good,stitches have healed,  walking daily for short time,

and riding his ecclipticle bike for 1/2 hour sessions to build up to his stamina to pre surgery.  As his is stage 4 metasistic Renal Carcenoma, we know the battle will be needing all his strength.  our oncologist visit is next week to set up the beginning of his Sutent treatment, and to hear the path results also.It is so good to hear of positive info pertinent to the treatment on this site,and ACOR although some short version words get confusing for us as newbies, we are learning and searching, 

hoping we will have minimal side effects and maximum results.

Best wishes to all Bev.