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hanspeter formerly anotheronebites back

Hans Peter
Posts: 8
Joined: Jan 2012

I will recieve an injection of zometa tomarrow and once every month there after. and then begin my treatment of Sutent within a few days. I got the skinny of what to expect from the doc but would like to hear from you folks out there about your experiances and how you delt with side effects and all. The closest physical support group to Ogden,UT is a good hr drive 1 way. I live alone and have fantastic support from friends, and my english setter Buddy! This site has been a wealth of information! Thank you all for your help :) Pete

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

Pete, do you have bone mets? I don't know whether other members here have had zoledronic acid but a few have had sunitinib (Sutent) and some are just starting on it and can compare notes with you. An effective way of catching up on past experiences with it would be to do a search for Sutent in the search box at top right when you are at the Discussion Boards list page.

jam66
Posts: 55
Joined: Jun 2011

Hi Pete,
I don't know what zometa is, but I can tell you about Sutent. I start my fourth and final (it worked, yay!) round tonight. My first round honestly wasn't that bad. Just some fatigue and loss of taste buds at about week 3. The second round was a little worse, since I was bumped up to 50mg a day. The most annoying thing was hair thinning. Thank goodness I had a lot of hair to begin with! Plus, my hair started to turn a lovely shade of grey at the roots. My eyebrows and eyelashes did as well. It's really lovely. :). The fatigue definitely got worse, especially around week 3. Taste buds left again, and I got insomnia for a while there. Not fun. My thyroid also was affected, so now I take medication for that. Anyways, not the most fun, BUT it worked, so totally worth it!
Best of luck to you. I'd be happy to answer any questions.

Jennifer

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

I'll also be interested in your further comments, Jennifer, against the time when I may hear those
Far away medicines with the strange sounding names
Calling, calling me.

jam66
Posts: 55
Joined: Jun 2011

T Wedge,

I'll gladly share with you all the annoying side effects. I heard horror stories before starting the drug, so I was pretty freaked out. But, really, it wasn't too bad. So, let's see, how about from top to bottom....

Head - hair thinned a lot, also felt kind of tingly on the top of my head. Hair also turned grey. :(
Nose- this one was perhaps the most annoying. The inside of my nose got very dry and crusty, and HURT! Had one nosebleed, though I
guess they're pretty common. Oh, and while I was on 50 mg my skin totally broke out! I had grey hair and zits. That was
fun.
Hands- dry, but nothing a little lotion couldn't take care of.
Body - tired! At the end of the four week cycle it was soooo hard to get out of bed. I also had insomnia for a while. THAT was the worst. I think it
was the thyroid thing that caused that, though. It's better now. Also, I can't tolerate cold at all. Drives my husband crazy, because I need to
pile on the blankets at night.
Feet- during the last round, the bottoms of my feet kind of hurt. No sores or blisters, just hurt. That went away as soon as I started the
two week break though.

I think that's it. I'm sure there are a couple more that I'll remember in the next few weeks. :(. Happy to answer any questions....

Hans Peter
Posts: 8
Joined: Jan 2012

Doc has put me on 50 mg straight out of the shute! What did your doc start you out at? I'm super glad it has worked for you! That gives me great hope !! :). I hope and pray I can have the same results...how many rounds did you have to endure? And for how long have you been on this medication? Im just soooo aprehensive about doing this. I havent ft as good as i do now for 5 or 6 years. Kinda hard to comitt. How were you feeling before treatment?

jam66
Posts: 55
Joined: Jun 2011

I, too, felt fine before the dx. This whole experience has been a whirlwind. I had a nephrectomy in may of 2011, then a CT scan in Sepember showed the cancer had spread to the liver. Started Sutent in October. I started on 37.5 mg a day so my body could get used to it. My second round was the 50 mg. After that round, the CT scan showed no more tumors! My oncologist wanted me stay on sutent for 3 more months, though....just to be sure I guess. But he put me back on the 37.5. So, I just took the first dose of round four....my last round, hopefully. I'll have another CT scan after this round to make sure all is still well. Honestly, the side effects are not bad until they build up in your system over a bit of time. So by week 3 of the four week cycle I would start feeling them. But really, nothing too horrible. Annoying, yes, but tolerable. A good friend of mine had to have chemo last year, and it's much easier to tolerate than what she went through. I call it "chemo-lite".

Keep us posted here! I've heard so many success stories lately, and it gives me hope for all of us in this club we never asked to be in!

Jennifer

Hans Peter
Posts: 8
Joined: Jan 2012

Was viven rihis IV yesterday morning. At 3 am I woke up freezing cold! It was the kind of cold u would imagine if you had fallen thru the ice and hypothermia was setting in! OMG.. Never been that cold in my life! Put on fleece top and bottom and wool cop! Grabed the Tylonal my bood pressure meds and got back under the blankets! Too about 20 to get warm and ofcourse toooo warm. Ok right now a wxcept my ribs feel like rhey were used for a punching bag!! Still waiting on my Sutent to arrive! Ordered thru AF pharmacy at Hill AFB. Was told someone had recieved it and sent it back to doc saying it was not avaable....BS .. They found the perscription and sent out the order Thurs. I am grateful for this clinic to help me but folks reAlly should pay attention to these things! If your not sure ask someone instead of taking a guess! I'll let it go now! Sorry...

Hans Peter
Posts: 8
Joined: Jan 2012

Greetings to everyoNe from Utah! Well I can say that I think Im doing better than I had thoughti would be!
At this point a bit tired , had itching for a week but that us pretty much gone now. Restless sleep the past 2 njghts and a stomach issue a couple days back. Actually not to bad! I do think that some copanionship a few hours a day would be a plus....i live alone with no family close by. Very easy for depression to set in. A little motivational help would be helpful too. The closest support group is an hr drive away and only meets once a month....
Oh ya ribs on both sides sore past 2 days? Dont know why. Had my surgery 2 Nov 2011.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

You could never be alone with a beautiful English Setter. I used to have an English Setter and she was the best. But if you're looking for two legged human companionship, this board is never far away. Remember that and keep your smiles on. Remember when you post and write, you're helping others who will go through the same thing as you are, so it's a give-give relationship. I think we all feel better when we're giving back.

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

Hanspeter, Alice has just hit the nail on the head. This board has become friends to and for all. I like the give-give concept. As for getting a dog, my daughter, had expressed how she can not find a serious relationship and that she has been lonely for someone her own age. Then she got an adorable puppy. Now she says, " I thought I wanted a boyfriend, but now I realize that I only needed a dog!"

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I am not sure I am going to write this right, but, maybe I can offer a suggestion.
I don't think the void of loneliness can be simply filled by having a human body in place. You probably need someone to connect to at the level "you" need. I agree with the above that this forum helps, but the answers and connections may not come in the time you need, and the physical / visual / audio aspect of relationship is missing. How about forming friendships outside the cancer world ? Maybe a church ? Community ? Pets are a great idea. And above that, you may also want to reflect on why the loneliness, or the need to be with someone, what is the void, and once you know that, find the appropriate relationship through one of the avenues that may be available. You will have to explore, no magic bullet. Wish there was, and I can offer it to you.
Raj.

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