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New Member - Very Scared

vdm13
Posts: 35
Joined: Jul 2012

Hi, all. I was diagnosed with Stage IV RCC a couple of months ago and had my left kidney, adrenal gland and 15 or so lymph nodes removed 6 weeks ago. I also have metastatic disease in my lungs and a possible node in my other kidney. I'm starting Sutent today and frankly I am scared out of my mind. I'm 42 years old with two little girls, 11 and 7, and I'm really afraid of (1) dying and (2) starting Sutent.

Any words of encouragement are appreciated. I'm really lost here.

Thanks,
Vin

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Vin,

First, I'm sorry you had the need to find this place, but--now you're here--you're in the right place. You'll find many people here who are knowledgeable, compassionate and willing to help you through it. While I'm not nearly as knowledgeable as Iceman, Texas Wedge, Fox, Gary, Liz and most other members here--I do know that it would be better to have a little more about your condition to offer sound advice. Number one is it clear cell or another type? If you have your pathology report, it should show that info. If you don't have it, ask your doctor for it. It should not be a problem getting it. Also, you'll probably want to check out AOOR.org (kidney cancer). It has many more experts in the field and very active.

It is perfectly normal to be scared. I am too and it's my husband that has the Kidney Cancer, clear cell, stage 4/grade 4. But one of many things I hold onto right now is the progress being made in kidney cancer. John's Dr. told us in our initial meeting with him that while a cancer diagnosis is never good news. kidney cancer is experiencing many breakthroughs and providing options not available just a few years before. So remember that. We've adopted the phrase gleaned from someone from this Board, "We're living with cancer, not dying from it."

John is currently on a BMS956558 and Votrient clinical trial and after six weeks of treatment he has a 31% reduction in tumors. Are you located near any hospital or cancer centers that may offer clinical trials?

vdm13
Posts: 35
Joined: Jul 2012

Alice,

Thanks for your response and my thoughts and prayers are with you and your husband. My specific RCC is Clear Cell Carcinoma. I'm also Grade IV / Stage 4. I'm being treated at Memorial Sloan Kettering in New York City, so I have access to their entire arsenal of treatments. Not eligible for any trials yet as we wait and see what the Sutent does for me.

I'm hopeful that my immune system will kick in and help out. I would love to be one of those 1 in 10,000 (or whatever the odds are) cases that end in spontaneous remission, but today, I'm a lot less hopeful than I am frightened, angry and just plain sad.

Just took my first dose of Sutent and wishing for minimal side effects like some others on this board I've read posts from. Keeping my fingers crossed.

Thanks again.

Vin

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Vin...I posted earlier and my thoughts and prayers are with you. My husband is in the top 10 percent on how well Sutent is doing for him. You just need to be positive that it will work. Half the battle is attitude! Keep moving and don't drown yourself in sorrow. I know....easier said than done. We have shed alot of tears. I just want to say that we know where you are coming from and our hearts are with you.

rquincellee
Posts: 1
Joined: Jul 2012

Just think of those two little ones,that will give you the in courage you need you'll be fine.
And Vin do not give up I think when your afraid your body gets weak,just think of the children and stay strong! Don't give up your going to be there for those little ones.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Vin,

You are not alone and being scared out of your mind is completely normal. Alice has given you very good advice, she is much smarter than she will take credit for, my catch phrase is shown above. A key element here is a positive mental and physical attitude, don't allow yourself to waste time and energy on that which you cannot control, be thankful every morning that your feet hit the floor and know that each day brings us closer to a true cure. I wish you the best of luck with Sutent, but it is not your only option should the side effects become overwhelming, you have much to fight for. You may also want to check out Gerald White's MAARS program which utilizes guided imagery to help your immune system recognize and destroy cancer cells naturally. Mr. White has survived RCC for over 20 years since being given 3 months to live, its an inspirational story and his program is inexpensive, several people here are using it. Keep us posted as things progress, we'll help any way we can.

Good luck and Godspeed,

Gary

vdm13
Posts: 35
Joined: Jul 2012

Gary,

Thanks for your thoughtful words and guidance regarding the MAARS program. That seems to really compliment my underlying belief and should help me overcome the fear that keeps getting in the way. I ordered the program and will let you know my thoughts.

Thank you again,

Vin

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Vin,

I'm glad to hear you took up Gary's suggestion of MAARS, which I have been using for some time, as has Alice's Husband, John. [I can also endorse Gary's statement that Alice sells herself short.]

It's maybe worth mentioning that Jerry White has not only survived for 20 years, instead of the 3 months he was told he had to live, but is now in his 80s and as sharp as ever. What's more, he was Stage 4 Grade 4, just like you and Alice's John, and myself (but I'm sarcomatoid chromophobe, not clear cell).

Forget about dying. Find out about the side-effects of Sutent and how other people have coped and what they have found most useful in reducing the inconvenience - there's a lot of info. to be had via a bit of searching e.g. here, on KIDNEY-ONC and on Cancer Compass. If necessary, ask questions on any of these sites and you're bound to get plenty of help.

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

Vin, you can do this!

I went through chemo 3 yrs ago for breast cancer (kidney cancer was diagnosed this year) and while it was a challenge, it's doable. I found it helpful to keep a daily journal of side effects. That way you can predict when the worst problems will occur in your cycle of treatments. Then you can plan for them--mine used to be 3 days after infusion so I would plan for my down time with books to read and movies to watch.

If your emotions, understandably, gets to be too hard to deal with, then ask for a prescription of Xanex. Sure helped me and what more appropriate situation for taking it? It helps you spend your time actively participating with your family, rather than being under a cloud of anxiety or depression.

Life isn't about how to survive the storm, but how to dance in the rain!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

What a good idea (your daily journal). I wonder how many others on drug therapy do this. Was it suggested to you or did you come up with it? It's the sort of obviously good idea that most people wouldn't think of! I hope it is, or that it becomes, standard advice for those embarking on therapies with known troublesome side-effects.

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

I can't remember where I got the idea--can I blame chemo brain?? I used to visit a wonderful breast cancer message board daily and there was a whole board for those of us going through chemo. I got so many great ideas as well as support there. By reading other's experiences I learned the possible side effects and the best ways to treat them.

That's why you all are so fabulous by sharing with those of us who have recently been diagnosed with kidney cancer. I can't thank you all enough for taking time to post!

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Hi Vin. I was diagnosed with Stage 4 RCC in May of 2011. I had my right kidney removed and also had tumor in my vena cava, so I had to have chest surgery as well. About 6 weeks after surgery I started on Sutent. My oncologist recommended I try 25 mg, on two weeks, off one week. His belief was that toxicity does not mean efficacy. In other words, getting really bad side effects doesn't mean the drug is working any better. I eventually got to 37.5 mg, 2 weeks on, 1 week off, but the side effects were tough, especially the reflux and hand foot syndrome. I went back to 25 mg, 3 weeks on, 1 week off, but the side effects were still tough. That's all academic now. At my last scan, after 10 months on Sutent, and regression of all lung mets and resolution of most, 2 mets in my lungs began to grow again. Now I am taking Inlyta. So far so good.

Don't be scared. First of all, the Sutent is going to zap those suckers! While the side effects may be a bit tough, they are certainly manageable. Second, I find it extremely helpful to focus on each day. I try to find the beauty in it, even if it's a thunderstorm or a bumblebee. It's amazing how you can re-prioritize your life. Don't let cancer steal any more from your life than it already has. One day at a time, my friend. That's what keeps me going. Take care of yourself, rest, eat well and get out there and walk....that is my best advice.

I really care how you're doing. Hang tough!

Paula

vdm13
Posts: 35
Joined: Jul 2012

Thank you, Paula, alice, Gary, TW, DR and everyone else for your kind words and sharing. It really helps. I'm still struggling but your generous input has helped me a lot already.

I'm about to take my 4th Sutent 50mg pill. So far side effects are minimal. Some crawly skin (only way I can describe the sensation) and abdominal discomfort. Hoping it stays like this.

Thank you all again,

Vin

NanaLou
Posts: 69
Joined: Oct 2011

Hello Vin,

I am right here with ya. I am 40 yrs old and my little girl will soon be 5. I had my Kidney out in November 2011. Reoccurence in January 2012. I have been on Sutent since late January. I am on my 5th cycle now. My last scan in April showed about a 50% shrinkage. I am still working full time. Although someday are pretty hard. I think the foot blisters are the worst. Hopefully your doctor went over some things to do. I would suggest that you start using a good lotion now on your hands and feet. make sure to take care of your mouth by rinsing after you eat. I brush with my daughters tooth paste. If you do get the foot blisters and I really hope you don't. When mine were bad I would put them on ice. Get some shoes your feet can get some air in, my feet felt like they were on fire in sneakers. I now wear Crocs. Things will happen different to you, but you can handle it. You will have bad days we all do. Just know that tomorrow will be better! I always look forward to my breaks from the meds. I am sending prayers your way. Keep us posted.

Nancy

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

I have read many of your posts...and your are correct. Live one day at a time and relish in it. My prayers are with you!

Machelle

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

Hi Vin...my husband was diagnosed with RCC in November. He had his left kidney, spleen and part of his vena cava taken out in December. The surgeon said the tumor was the size of a football. With all that, he is now on his third cycle of Sutent. He works every day with minimul side effects. A few places on his hands from the hand and foot disease but nothing he can't handle. Alot of gas......but we can handle that. His last CT scan three months ago showed that the nodules in his lungs have shrunk by 2/3rds! We go back for the next scan on Wednesday and are confident we will have good news again. I konw it is a case by case basis, but wanted to tell you that Sutent can be a god send. Keep your head up and be positive. It does work!

foxhd's picture
foxhd
Posts: 2058
Joined: Oct 2011

I'd been away a few days but now upon reading others posts I think you get the picture. Staying positive and living your life is a powerful drug. Just refocus when distracted.

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

You are an inspration....live life to the fullest. Everyone should do that everyday...cancer or not. Hope you had a good ride. Pat has a Harley too! We both love to ride.

Machelle03's picture
Machelle03
Posts: 27
Joined: Jul 2012

He is doing 50mg for 4 weeks and 2 weeks off. It's working for us. You just have to keep moving.....and keep on praying and enjoy every minute of your life. Just remember, none of us are granted tomorrow! God speed.

vdm13
Posts: 35
Joined: Jul 2012

Hi, all. Just a quick update. It's been two weeks since I started Sutent and have been very lucky so far as the side effects. Some stomach upset and tired, but I'm working and pretty much maintaining a "normal" life. Re-read my pathology report and found out there was "extensive sarcomatoid component and tumor necrosis". This didn't concern me until I looked up what sarcomatoid meant, which sent me into a brand new dive into despair. I've since come to grips with the fact that whatever it is in my body, it sucks regardless of stage, grade and so on, and I don't want to dwell on particulars and statistics, but rather on how to get my body healthy and my immune system fighting this beast.

I ordered the MAARS program, am about 2/3 through the book and listen to the CD at least once daily. I get it and believe in it, although the "general feeling of well being" has not quite materialized yet. I got on my bike for a short (4 mile) ride the other day and fealt good, despite some shortness of breath, which I attribute to being out of shape following the surgery some 10 weeks ago now, and not to my lung mets. I refuse to believe that can be the case.

People keep commenting on how good I look, and frankly, I really do. In fact I said to my wife the other day "How can I look this good and be so sick inside?". In any case, I'm fighting the fight, need to ratchet up my healthy living lifestyle (have to get back to juicing, better nutrition and so on) and build up some confidence.

I keep telling myself that dying is simply not an option as my little girls are aged 7 and 11 and need their Daddy around for a while. So I calculated about 20 years to get me to the point that they are into their adult lives and I've experienced all of the graduations, sweet 16s, and (maybe) weddings I can. And I assume that in that time there will be a cure for this terrible monster of a disease. I tell myself every day that cancer is not welcome in my body and instruct my immune system to fight, but I still struggle constantly with worry and sadness. I hope that this improves over time.

Due to see my oncologist in two weeks, but I think they will only do vitals and blood. No scan until month three of the Sutent treatment.

Would love to hear from others to understand if my progress is about right compared to others. We have to beat this together. I feel like I can and the friendship and support of this group is invaluable. I thank you all again.

Best regards and prayers,

Vin

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Vin, it sounds as if you're making all the right moves and I'm glad to hear you're using MAARS to good effect.

Re Sutent - I might get put on it, in which event I'll be happy to compare notes with you. Meanwhile, you can research how others have done/are doing on it by a simple word-search. At the top right of this page you'll see "Search CSN content". If you click on that link and input "Sutent" in the search field you'll get a host of threads to look into. You can get a more focused search via the box at top right of the screen where the kidney cancer threads, including this one, are listed. However, the general search will be good enough since Sutent is used primarily for kidney cancer, so you won't get many irrelevant hits with the more general search.

Kepp on fighting the good fight!

vdm13
Posts: 35
Joined: Jul 2012

TW, I feel a little uncomfortable commenting on Sutent this early in my treatment (Day 15 of Cycle 1) but I will tell you this: Once I got over the initial fear of taking that little pill, I have learned to embrace it as a friend. It is here to help me, after all. I have also included in my meditation (now MAARS enhanced) that my body is more than capable of handling any side effect it may throw at me. So far I've been lucky. A healthy coat of Bag Balm to the feet and hands morning and night seems to help too. I had some hot feet and hands, but no drying, cracking or peeling. Looking forward to (1) seeing how my body maintains during the second half of the cycle (I'm optimistic) and (2) my first 2 week break!

Thank you again for your continued support and encouragement. Happy to share progress and answer any questions I may be able to from my humble newbie position.

All the best,
Vin

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