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Hi everyone! My husband Henry was diagnosed and left kidney removed at end of January. PET showed two active lymph node sites near aorta and in bone near t1lamina. First iv of zometa on Mon and has been in horrible pain. Began Sutent today. Appreciate your comments on either treatment!
Posted on 02/29/12, 06:04 pm
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Reminder: This is a support group for Renal Cell Carcinoma (Kidney Cancer). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Reply #1 - 03/01/12  7:34am
" Hi Cindy,
I just wanted to say welcome to this group but so sorry your husband has RCC. People here are very caring and supportive so you have come to the right place.
There are others here who will be able to give you information and experiences on these two treatments.
hugs "
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Reply #2 - 03/02/12  12:19pm
" Hi Cindy,

I'm new to this entire site. I thought I might shed some hope for you. I am an RCC survivor and my 5 year scans are coming up in less than a week. I had my left kidney removed in January of 2007 at the age of 31 and had stage 4 RCC that had metastasized into my right femur (big leg bone) and I had to have the top third of the bone removed and replaced with a mega prosthetic including a full hip reconstruction. I then went through a total of 6 surgeries that year and have been cancer free ever since.

I was told a different story by all the doctors I interviewed around the country and was given 6 months to live (5 years ago). Sutent was one of the options they gave me. I decided to go with a doctor in Houston who made sense to me and said "why would you go on any drug with no evidence of disease to see if it works." The way he put it was like this... CANCER IS MANAGEABLE! I have known so many people over the last 5 years that have had a struggle with it, but they have more better days than bad days, so focus on those good days... drugs will work for a period of time then they will stop working, but then you just move to the next option. I did not take any drugs and chose a natural path instead, but I am NOT advising this for you. However, it may help to seek out a Naturopathic Doctor to help with building the immune system. Naturopaths work with vitamins/minerals and natural treatments and are trained to work with modern medicine as well... so perhaps the two (natural and prescribed) may be able to help him with pain and strength. You can search for a doctor at www.naturopathic.org.

There is also a great one-on-one cancer support group that tries to pair you up with someone who has a similar situation... www.imermanangels.org. I found great strength and hope through them and am now one of their volunteer angels (mentoring survivor... though I think we are all survivors and that term should be changed).

Anyway... I will pray for both you and your husband and hope you find the information you are searching for.

HUGS and LOVE to you!

Amanda "
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Reply #3 - 03/03/12  1:57am
" Hi Cindy,

Welcome to the Renal Cell Carcinoma group, we all are so very supportive here and truly understand what you both are going through.. My husband also has Stage 4 which metastisized to his lungs, 2 posterier Ribs and last yr a 3 cm renal bone met was found just below his left shoulder.. Of coarse it did fracture the bone and he has a rod holding the bone togeather..

My husband also is on Sutent, his first treatment was in 2008 and that was Torisel, he had great luck with it.. It kept all his tumors stableized for 15 months and the toxcity of this drug got so bad he was in and out of the hospitazl for 2 months.. He stayed off treatment for 1 yr and thats when the bone met was discoved, he was then put on Votrient and that gave him a severe critical hypertensive (very high blood pressure) when he arrived at the ER they were sure he had a brain bleed but he was so very lucky he came out of that fine.. He has been on Sutent now for close to 6 months and doing absolutely great, of coarse our oncologist started him out on 25mg and tomorrow he will start a 37.5mg dose because he is so very sensitive with all these tageted drugs.. One thing i will tell you your husband blood pressure should be monitered everday with a bp cuff at home, this is very important to do.. I assume your husband starts out on the 50 mg dose which will probably give him side effects, if this happend don't be afraid to let your Oncologist know about anything that is going on.. He may get get rashes, high blood pressue, and mouth sores.. He doesn't need to suffer with this, there are many medications the Oncologist can prescribe to help with the side effects.. He also may need to lower the dose to 37.5mg which happens to most people who start out on a 50 mg dose, it works just as well so don't worry about taking a lower dose.. No one should have to suffer with the awful side effects of any of these drugs.. Metastic renal carcinomaa can be manage and it can give people a very long life, my husband will be coming up on his 5 yr living with this cancer on Aug 1st this year.. The statistics for this is 10% of people making the 5 yr mark.. But it can be done, when my Tim was d/x in Aug 2008 they gave him 1 yr, he had his left kidney removed Nov 17th 2008 started treatment the last of Dec that yr.. Tim had an upper right lobectomy done to remove his largest lung mass 2 yrs ago, we found out the lung mass was growing into the aorta wall and was almost through and his surgery needed to be done very quickly.. No one ever told us this except one radiologist picked this up which saved Tim's life.. Tim was very close to hemmorageing and he would of bleed to death if he didn't have this surgery.. Cindy, i am not trying to scare you, i just wanted you to know there are many kinds of surgeries that can remove masses and tumors.. You just need to ask your Oncologist the right questions the best way to do this is write out a list to take to your husbands next appt so he can answer anything thats important and you need to know these kind of answers.. If you have any question or need to talk feel free to write me anytime, i will help you get through anything thats bothering you to the best of my ability..

I hope telling you some of our story has helped you, you don't have to be afraid of this cancer, anyone on our site will help you too, we all have been where you are today, and we all can relate to where you are today.. Always remember if or when the Sutent stops working there are always another drug to try.. I think your husband will do very well on Sutent, it's a great drug for kidney cancer.. You most likely will need to send me a friends request in order to write to me and i will agree to it immediately, and you will beable to write me anytime.. My profile is private and only my friends can write to me you can write & answer this on the boards if you want to but i'd very much like to be friends..

Take care, and don't forget to moniter your husbands BP !!

Hugs,
Beccaanne "
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Reply #4 - 03/03/12  2:10am
" Hi Cindy,

i just wanted to add to let you know Zometa is excellant, Tim is infused with a treatment every month.. It will strengthen your husbands bones so that won't break easy.. If your husband is having alot of pain, tell your Oncologist, he will prescribe some pain meds for him.. Renal bone mets are very painful and no one should ever suffer with any pain when they have cancer.. You need to be your husbands best advocate, he doesn't deserve to be in pain and if you need to be persistant just do it.. Your oncologist will prescribe a narcotic for him because he needs to rest.. I just wanted to add this, hope it helps

Beccaanne "
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Reply #5 - 03/05/12  1:02pm
" Hi Cindy,
Welcome from me too!
I have been on Sutent for just over two years now. My cancer is inoperable, Sutent has kept it stable so far, so it is a fantastic drug. I have to agree 37.5 dose is far more managable than 50 just depends on your tolerance level. I dropped dose after round three.

At Christmas I found out I have some bone mets in the lumbar region of my spine. Went trought some radiotherepy the pain went for a bit ( probably beacuse of the steriods I was on at the time) then came back. I had my first treatment with Zometa last Friday. Saturday morning I felt really shivery and hot at the same time the felt sick. My temperature was up so under advice from the hospital went down for some blood tests. Seven hours in A & E waiting for the blood results to come back, an ECG because by now my pulse rate was through the roof, urine tests, introvienous anti biotics at 10.30 they decided to keep me in over night as my temperature was not going down, following morning had a chest X ray !
All results were clear. they could not pin it for sure on anything and said it might be a side effect of the Zometa or just a virus !!!

I have a question for you.. Did your husband have any reaction to the Zometa and was he also perscribed calcium tablets to take as well?

Keep strong for your husband, having someone beside you really helps. Could not do it without my hubby.

Best wishes to you and your husband

Lynn "
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Reply #6 - 03/23/12  3:59pm
" Hi Cindy,
I am very new to this site, but I'm so glad to find other people going thru the same situation. My dad was diagnosed with RCC two years ago. He also had his left kidney removed along with a few lymph nodes. At that time, his doctor did not recommend any other treatments. Now, they've discovered it is back--this time in adrenal glands and lungs--stage 4. He will start Sutent in about a week. "
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Reply #7 - 05/12/12  8:38pm
" Hi Cindy,
I just joined this site and group and have been blessed already reading and knowing that others have gone through RCC like me. I was amazed at Amanda's recount of her 5 year success story! My experience with Zometa and Sutent were not good, but to this day I can't say which was the cause of most of my side effects. I was put on Sutent, Zometa and started radiation treatment all in the same week, while on strong pain meds - this was a week after coming home from surgery. I did not handle the side effects well and vomitted for 5 days after each Zometa IV. They reduced my Sutent to 37.5 mg but I still had nausea, taste and appetite loss, stomach pain and high blood pressure. I got a new oncologist who agreed that my scan was clean and didn't know what we were treating, and took me off Sutent. After 2-3 months, the scan last week showed new lesions, so I'm going to start taking Votrient and hoping that I will tolerate it better. I will not take Zometa with it, however, so I can tell what is causing any side effects. I hope your husband tolerates the Sutent - you are more important than ever to him during this time! Be blessed. "

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