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Summer 09 issue of Cure

donna_lee's picture
donna_lee
Posts: 438
Joined: Feb 2009

If you have never seen a issue of Cure, or read it online, here is your chance for more info. My copy arrived on Thursday and there is finally a full article on Kidney Cancer and the drugs that are available.
For over 2 years, I have read the mag and bemoaned the fact that just about every other type of cancer was written about, but not "ours."
"Cure" is free for cancer patients, survivors, and caregivers. Since you don't have a tear out postcard in front of you, here are the other two ways to subscribe. Go to www.curetoday.com/subscribe or call 800-210-cure (2873).

In addition to describing the drugs/types that have and are being used for kidney cancer, there are some others that are in early clinical trials. If you want to wach how a partial nephrectomy is performed, log on to: www.curetoday.com/reining_in_renal_cancer

When I was first Dx with Stage IV Clear Cell RCC in 2006, I was only offered surgery because it was only in my kidney, liver, and lymph nodes. And since they felt they got it all (not-it recurred in 07 and 08) I didn't fit any of the drug trials because there was no active site they could track. And at that time there was only Nexavar and Sutent. I was not and don't look forward to ever having to go on drugs, but it looks like what the research is turning out is getting better with time.

Happy Reading.
Donna

Rob FWNJ
Posts: 20
Joined: Dec 2008

Dear Donna,
Thank you for this information. I signed up to receive the magazine.

As I get closer to my CT scan (July 23rd) the anxiety and fear begins to build. After reading the articles from the June issue (which included quotes from my oncologist) I am reminded that there is hope for all of us living with this awful cancer at this time. Thank you again!

Sincerely,

Rob

imbkuz
Posts: 52
Joined: Apr 2009

Hi Rob
Been following around your posts and my husband is also being treated at Sloan.Advanced RCC Stage IV mets to lungs, etc., etc Finishing first round of Sutent 50 mg. We were there today for blood work Ugh! and his CT scan is July 23 too. Small world. So I can appreciate how you feel...it's called scanxiety.
Warmest Wishes
imbkuz

imbkuz
Posts: 52
Joined: Apr 2009

Hi Donna lee
I found out about this magazine on the forum at kidneycancer.org. and it gives me HOPE. I'm glad you're spreading the word.
Enjoy the summer for me!
imbkuz

Rob FWNJ
Posts: 20
Joined: Dec 2008

Thanks for the post. It's nice to know I'm not alone! As you I'm sure you read in my other posts I am definitely second generation (my father) and maybe the third generation (My grandfather; too long ago for a CT scan but an X ray showed a mass on his kidney, his liver and other places. no pathology was ever performed I guess because of his age and condition) to have this cancer. As I go through my treatment I feel a little guilty that my Father received such poor care from his doctors and hospital on LI (Granted it was over 11 years ago. ) and I have received nothing but the best care. I had an excellent Surgeon (DR. D) and I think one of the best oncologists (Dr. M). I hope your husbands experience has been the same. I also hope his CT scan goes well too. Please let me know how it goes. My scan is in the morning and my check up is after that. Who knows maybe I will see you both there.

Sincerely,

Rob

imbkuz
Posts: 52
Joined: Apr 2009

Hi Rob
His CT scan is right before noon and Dr. M at 1 pm. Will you be around. Don't feel guilty about your dad since they really have only come out with these new meds in the last few years.Are you on any medications now? Even though our lives have been crazy we feel blessed to have the care we are presently receiving. I think that your tumor was extremely large but I don't recall what stage you have. I know you said high risk. I'm happy that you are still able to work as my husband can't. Well hope to chat later and maybe even meet up.
Regards
Babs

donna_lee's picture
donna_lee
Posts: 438
Joined: Feb 2009

Bob and Babs--
Glad you've found the mag helpful. HOPE is the one noun/verb I have clung to for over 3 years now. Even when I was really low this past winter, there was still hope that things would get better. And they did, finally with a change in the antidepression med.
I'll be off line next week...it's "road trip" time with my 12 year old grandson.
Donna

imbkuz
Posts: 52
Joined: Apr 2009

God Bless you Donna lee. Have a fantastic time for me!(and you of course:) You deserve it.
Can't wait to hear about adventures when you return.
Enjoy the moments and seize each day.
Always
Babs

Rob FWNJ
Posts: 20
Joined: Dec 2008

Hi Babs,
My scan is at 9:40 and my follow-up right after but I'm. Pretty sure I will still be there when you and your husband arrive for his appointment.Maybe I will see you both there.

Sincerely,
Rob

imbkuz
Posts: 52
Joined: Apr 2009

That would be really nice. What a small world. Ok so should I be wearing a white flower in my hair (only joking) so we recognize each other:)I really hope that everything goes well for you.I'm starting to get nervous already since my husbands wbc and abs neutrophils were low and thyroid panel was effected by first cycle of Sutent. Thought he was doing really well until his blood work came back. Did you have many side effects?
Regards
Babs

Rob FWNJ
Posts: 20
Joined: Dec 2008

Hi Babs,
Well I'm finally back in the USA. I hope that I can meet you and your husband next week. I'm pretty easy to spot just look for the guy playing with his BlackBerry (my employer wants us to stay connected while out of the office) while trying to read a book. I usually try to keep myself occupied while waiting.

I understand your anxiety. I am beginning to feel that 'Scanxiety' myself with more than a week to go. I had a conversation with a family member yesterday who could not understand why I am so anxious. They said I should just be thankful that they caught it when they did and move on. Honestly I am very thankful but that does not make this any less scary.

When I was on Sutent my major side effect was extreme fatigue. Some days it was so tough to wake up and sleeping did not help matters either. It got worse each cycle. I am fortunate that since this was adjunctive treatment I was only on it for 9 cycles which I completed at the end of April.

Sincerely,

Rob

imbkuz
Posts: 52
Joined: Apr 2009

Well actually you're going to look like just about every New Yorker:) Not to insult you.Blackberry,phone,etc., etc. rush, rush, rush. No stress in NY!!!!
I know family members mean well but not to alarm you do they realize that it's the kind of cancer that has to be monitored for the rest of your life because it can come back. Yes you seem very lucky that it did not metastasize especially the size that it was but you have every right to your feelings. It's normal...everyone I talk to gets anxious before the CT scan except my hubby:) Oh dear besides insulting you about looking like New Yorker (not that there is anything wrong with that....I love New York) now I insulted family member.Sorry...just extremely tired and overwhelmed....not only dealing with husbands Stage IV RCC. His did metastasize. Ugh!
God Bless you that you are still able to work and travel.I'm looking forward to meeting you that's if you still want to:)
Warmest Wishes
Babs

Rob FWNJ
Posts: 20
Joined: Dec 2008

I think it as been my turn following your posts. Thank you for all of your very positive posts! I think they have helped many people (my self included) feel just a little bit better! I look forward to hopefully meeting you next week at Dr M's. I will be keeping you, your husband and family in my prayers. I will be praying especially for a good CT scan result for your husband next week.

Sincerely,

Rob

imbkuz
Posts: 52
Joined: Apr 2009

Rob Thank You. You certainly can count on being in my prayers as you have been. Wishing you a good CT scan too. Isn't it funny how life changes our way of thinking....some people wish for a diamond bracelet, new car, etc.,etc., I wish for good CT scans:)

Warmest Regards
Babs

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