Hello I am a 32 year old mother of 4 .I had a radical left nephrectomy dec 9 2011at cancer treatment centers of America in il. Reading all of your info has helped me and my family. Thank you
Welcome to our ride. Sorry to say that as you are too young. We all hope your procedure was all you will need. With 4 children, your motivation should be easy. We are here to support you as needed. Don't be a stranger. Just get better.
Unfortunately there are a number of young mother's who have had to join our club over the past year. One even went on a roller coaster 3 months after the surgery. Do not do that. Wait at least 9 months for your body to heal before trying that.
Best wishes for a full and complete recovery.
WILL not try that! I have a great family and hubby no lifting for me.I MISS PICKING UP MY KIDS AND ASKING FOR HELP.
Always remember that we will all be here to try and help you through this. Most of us are LIVING proof that it is possible!! Take time in healing and let time heal you.
I have a cancer center in Philly close to me. Can you tell me what makes them special or unique. Is their treatment options the same as everyone elses, a single protocol at a time or is is a combo of treatments some of which may not even been intended for RCC??
Gail mother of Cody 21
diagnosis 8/10/11 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head skull tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Xgeva injection. No lymph,lung or brain involvement
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!) Still unclassified
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans (due in late Feb)
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)
The phone Call to Ctca. They took my insurance info set up a flight paid for it.The next week I was at Catca! The center pays your flights, food,hotel,and a shuttle.You are the main focus from the second you walk in and not just a number.I had blood work met with 3 doctors and a date for surgery before the 3rd day of my intake visit.I have my own Care caremanager that calls you back within 20 min and a docs who gives you there cell numbers.Ctca lines you up with a care team of about 10 people. Mind and body therapist,Clinical oncology Dietitians,Naturopathic oncology provider,Care manager,financial counselor,surgeons,oncology doctor,nephrology doctor,family med doc,pastoral care,nurse navigator,and many more.I can't wait to go back and visit all of our friends that we have met.Has anyone else been to Ctca? The doctors all meet together for a game plan and test are done in the office and results sometimes that day.with the families we have met I talk with them on the phone every week and set visits up together. Wheeen I came out of surgery they came and saw me everyday. Cancercenters.com. at the end of the day we are all there for the same reason .Thank you Ctca
Sure sounds like you had a great experience. Good for you.
Sounds like outstanding care, I hope I never need to go see them, but will hang on to the info.
I'm new too! Diagnosed 3/3/11 had total left nephectomy 3/13/11. Stage 1, grade 3.
My doctor never told me squat about diet. He didn't have much of a bedside manner. I have'nt had my 1st year check up. The NCCN is saying that you should have CT scans at 6 months, 1 year then every year after. I feel frightened about my year check up. I didn't do the 6 month one. GFR 32, creatinin 1.8 and have this fanthom kidney pain were my kidney was. Is that normal ?
Hi Cool Breeze,
Sorry about your health issues, but welcome to our growing club. I had a radical nephrectomy in Aug. 2010. I had pain where my kidney was off and on for over a year, especially after eating. It went away on its own, but you should consult a doctor about it anyway. It sounds to me like you need to find yourself a better doctor. No talk about diet? No followup tests except for labwork? I was Stage 1, Grade 2. I had two six-month followup visits with my urologist and had two chest X-rays, an ultrasound, and the usual blood work done. He has held off on the CT scan which I expect to get during my first annual visit. With those low GFR and high creatinine levels, you also should be seeing a nephrologist. Anything above 90 for GFR is considered normal. You've lost a kidney so a lower GFR than before the surgery is to be expected, but 32 is pretty low and you should talk to a nephrologist about it. Age is also a factor in determining GFR. Normally, the older you are the lower your GFR. That's just one of the negatives about getting old. A nephrologist can also advise you on your diet needs. You'll probably be told that you need to avoid a high protein diet and be wary of too much potassium and to drink plenty of water. Staying hydrated can help to lower the creatinine levels, thus raising your GFR. Do you have a high blood pressure problem? High blood pressure is very bad for the kidney. If you have it, you'll need to control it with medication and cut back on the sodium in your diet. Cutting way back on the sodium in my diet helped get me off blood pressure medication. Find a doctor you feel you can trust.
My blood pressure is great. I'm freaked about the prognosis of grade 3. I wasn't told that by my doctor either. He really didn't say much.
Hi Cool Breeze . I agree with everything that mike has told you. I would only add that with your GFR level you might want to speak to a nephrologist and a renal dietitian . I was at stage 3 prior to my radical nephrectomy last year . I'm now at stage 4 with a GFR of 19. I see a nephrologist and aside from monitering my creatinine level he also watches the level of potassium ,sodium ,and calcium in my blood which indicate how my kidney is function in accordance with my food intake .Diet is the key to maintaining health kidney function. Goood luck and God Bless.
Life for you, Hi Just wondering how you have got on the last few weeks, I had the same as you 6/1/2012 keyhole, Ive been told to have another 3 weeks off including this week, I can now sleep in my normal position, I have a couple of stomach twinges each day, but have not tried to do any strenuous tasks, Im driving a little when I have too ,still fealing a little weary, Ive tried to keep warm but have caught a cold over the last few days,
I feel great sleeping as much as I can with 4 kids.I'm also back 2 all the things I did before surgery.My children all came down with colds then the Flu so the last 2weeks has not been fun.I have been fighting a cold,sinus infection,flu,ear infection,upper resp infection,and now Bronchitis.I will go for scans in April 1st time after surgery.We hope my immune system gets back 2 normal soon.I get everything now.
Nicole 32yr mother of 4
Surgery Dec 9 2011 radical nephrectomy
You have experienced a heart rending bump on life's road but I just wanted you to know that, as hard as it may seem to you now, You do have every hope for the good life. Many of us have gone through that dark tunnel and came out safely on the other end. In my case it was a radical to remove a record 20 pound rcc tumor with my left kidney back in 1993. I went through the worst of times with 2 killer surgeries and 8 months of failed treatment (after it went metastatic to distant organs)that was worse than the disease. It was necessary for me to develop a program of mind/body guided imagery to beat it after the treatments had failed. I have been cancer free now for 15 years. There have been many of us go that route and there are several of their stories on the webpage ( www.cancerwarsmaarsjourney.com ) as a part of a pro bono mentoring program that I have run for the past 15 years. Just thought you might find this interesting.
Are you curently cancer-free? There's a relatively new phase 3 clinical trial for pazopanib (Votrient) that is currently approved to treat those with metastatic RCC. This 1-year trial is aimed at demonstrating that the drug can prevent recurence. Window to enroll is 4-12 weeks post-op. I just enrolled last week. I too had a recent radical nephrectomy (Dec 1, 2011.) I am a 52-year-old father of 2 elementary age kids.
KG, were you diagnosed with metastatic RCC? (You say the trial is approved to treat those with metastatic RCC).
Do you know whether this is limited to patients with clear cell RCC?
T-W , you are sharp to have picked up on that. But he will straighten this out. This is the study I was offered last spring. Even if I was interested, I made have been denied as they thought that I already had mets. And apparently correctly.
No, TW, I do not. My chances of not having a recurrence are moderate and I'm looking to up those odds.
Let me clarify: this is a phase III double-blinded trial where GlaxoSmithKline is looking to establish that Votrient can be used as adjuvant therapy to prevent metastatic disease and/or increase disease-free survival. Patients need to have been diagnosed with localized clear cell RCC (or predominantly so), be 4-12 weeks post-nephrectomy, and be free of metastatic disease. 50% of the subjects will receive drug, 50% placebo.
Refer to trial 113387 on the NCI website (http://cancer/gov).
Please forgive me if I was unclear. The world of cancer survival is brand-spanking new to me.
By the way, welcome to our club. Pull up a chair and hang on. Lots of shared information here. I was encouraged to be part of this study. At Dana Farber. I opted out due to the time, travel and the fact that after I spent several hours at D-F, they never even called me back after I had their requested Pet scan. No follow up what so ever. ( I am now starting to believe that they KNEW I already had mets and didn't share this info with me or my local oncologist.) As you read more of our threads you'll see I entered a trial with MDX-1106. I feel very fortunate to be part of it. One surprise response I have recieved is from people who thank me for being part of a trial with such high expectations which may help others in the future. I have never felt like a lab rat but I guess I am. I guess you are too. Seems most people opt for standard treatments. Good luck in your recoveery. Fox.
Thanks for the clarification KG. This sphere may be new to you but you seem to be picking it up pdq!
The inclusion criteria are a bit hypothetical, as Fox's post shows [fox, hound, lab rat - a shape-shifter it seems!] - 4-12 weeks post op. there can't be much certainty whether one has mets or not?
As you'll quickly discover this is a fascinating Alice in Wonderland world. Trials that might show that you haven't acquired something that you perhaps wouldn't ha