STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

[bldblu_2]

Thank you for sharing. I look forward to reading your future updates and hear how you are doing on Stivarga. The doc mentioned this is our next step as well.

[Sharona]

Lindaelizabeth,
Good luck to you on four a day. I am anxious to hear how you do. When I first started, the nurses from CVS Caremark, the supplier, recommended that I moisturize hands and feet three times a day, wear socks all the time, and to sleep with gloves and socks. She recommended a cream such as Utterly Smooth and gloves and socks from the Dollar Tree. I have not had any problem and I'll have admit I've gotten lazy and I hate sleeping with gloves and socks. I am now on two a day and will continue until I see the onc in three weeks. Good luck!

Sharon

[Lindaelizabeth]

Dear Vicki, bidblu_2 and Sharon,
Thanks for the encouragement! I appreciate all previous posts as they've helped me become more knowledgeable and prepared. Sharon, I will start moisturizing three times a day thanks to your advice. It would be wonderful to hear updates as you continue on Stivarga. If anyone reads this thread and wonders what day 1 on Stivarga was like for me, it was great. Didn't feel any different. Nice to have treatment at home instead of in the infusion center. Will let you know how it goes next week. One piece of advice from my day: If you slather lotion on your feet, don't walk barefoot on a wood floor! I slipped, but didn't fall. Love and God's blessings!

[WifeOfMike]

Hubby HATES CREAM! I say that casually, but he REALLY HATES CREAM!..... and yes he almost slipped in the bathroom & mumbled all the way back to bed
But, I kept saying an ounce of prevention is worth a pound of cure & I KNOW you didn't like to be flat on your butt in bed with sore feet, so he kept slathering

The best suggestion was actually the kool (not cold, not hot) water in a small tub & soaking a couple of times/ day. It keeps the capillaries from building up the chemo & trying to dispel out of your tootsies.
The pill form was a pleasurable experience relative to the hooking up to port/ portable overnight pump ordeal. A lot more freedom & more normal routine like taking a daily vitamin

Glad tips are useful!!! Can't remember the best cream (and hubby is snoozing, or I'd sneak in the bedroom)...... but I did post it recently on a Erbitux Rash question. It seriously got rid of his grade 3 blisters within several days, which amazed me (as much as how quickly it came on)

I wish you gals HUGE success with Stivarga and ZERO side effects!
(((BIG HUG)))
Vicki

[Bev G]

I hope you are all getting your liver enzymes checked MORE rather than LESS often. This has been such an area of importance for so many of the CC family on Stigarva. Ashlee was really glad her onc was with her on this one, and he was checking hers weekly, ultimately finding the problem with the whole biliary thing a bit earlier than it might have been found. All the best to all of you on the drug.

Bev

[Lindaelizabeth]

Hi All,
Here is an update of my experiences during week one of my Stivarga treatment. Not expecting such a quick onset, but hand-foot syndrome became a factor by day three. Experienced soreness, redness and tenderness of feet, especially in area affected by h/f syndrome during previous chemos. My skin must be vulnerable. I used Aquaphor and Udderly Smooth Udder Cream to treat, thanks to tips on these message boards. Soreness continued all week, but no blisters, and by day 6 and 7 my feet were noticably better. Friends were praying! Found some great gel booties at Steinmart called Pedi-Jams. I'm wearing them tonight as I pad around the house and what a difference! They treat the skin with jojaba, vitamin e and olive oil. Awesome! Other than, h/f syndrome, I've felt great! Good appetite, energy, a clear head and no nausea. Oncologist is doing bloodwork every two weeks and will keep an eye on liver. Hoping to see my CEA go down! (It's at 17 now.) I'm thanking God for helping me get through week one and thankful for those who have gone before. Plan to continue four pills a day. Blessings and love, Linda

[Sharona]

Linda,
So glad you are doing well on the four a day! Sorry to hear about the feet, though. I will have to check into the booties at Steinmart ( one of my favorite stores!) my feet have not really been affected much.
Up until this past week, I had a problem with appetite and sores on my tongue. I am currently preparing for more CyberKnife for a new brain met,so the dr put me on steroids last week. I am still on two a day Stivarga and I am wired and ravenous! My CEA went from 18 to 24, but we'll worry about that after zapping the new tumor.
Thanks for the update and I hope you continue to do well!
Hugs and prayers,
Sharon

[Lindaelizabeth]

Sharon, Good to hear from you! I am so sorry to hear about the new brain met. Praying treatment is a huge success! Hoping you don't have symptoms to weigh you down. Glad you are tolerating Stivarga and that you don't seem to have much h/f syndrome. I know the tongue sores must have been hard. So terrible the medicine that can help us also hurts us! Keep fighting and I look forward to hearing updates! Love and hugs, Linda

[WifeOfMike]

Hang in there Linda!

Glad to hear tootsies are on the mend & tips worked. If it sneaks back up your Dr may recommend kicking back to 3 pills.
Wish we had known..... & absolutely had to do all I could to make sure nobody went to his level of YUCK!
Soak, Soak, Cream..........Now Ladies..... kick some Cancer BUTT!!!
Vicki

[Nodak]

Hello Just thought I would give you my DH's experience with Stivarga so far. He started it 2 weeks ago, 4 pills a day dose. He took it for 3 days then started having bad headaches. His blood pressure was high, 179/117, etc. The blood pressures were consistently around that level so he stopped and they told him to take a week and a half off, then will reevaluate. They also ordered an MRI, which was negative, to check for brain deformities caused by high blood pressure I guess. He has also had foot pain, which I don't know if is related or not. He will go back to the doctor Wednesday. He went on Stivarga after being on Iranetecan and having his CEA rising, growth in both liver and lung tumors. We think he will get started again with a reduced dose. I guess I don't have any idea how it has worked yet but will let you know later. Good luck to everyone else who is trying this drug. It's good to hear from everyone what symptoms, etc come up.

[bldblu_2]

Glad you are having positive results. Keep us posted please. Thank you Linda
.

[bldblu_2]

Nodak, hope he can resume with a reduced dose. Peace & Love

[GrouseMan]

Nodak,

Stivarga works similarly as Avastin and acts on VEGFR2-TIE2. It would not be out of line to expect that some of the side effects would be similar to that of Avastin and would be treated similarly as well. Is you DH also on an ACE inhibitor to maintain his BP in the normal range? This is how they manage the increased BP in patients on Avastin treatment. This in combination with a dose reduction may make everything quite tolerable. Good luck.

GrouseMan

[Nodak]

Thank you for the responses. My DH has been on the same blood pressure meds the whole time through other chemos ,it hasn't been enough of an issue to change dose until now but, yes, they upped it now to control. I hope everyone that is trying this drug has some good results. The oncologist said everyone metabolizes chemo in different ways and my DH seems to have trouble with this one. It may work great for others though. My DH tried it again at 2/day but ended up with hand foot syndrome-couldn't walk anymore and doctor stopped the chemo for a week to let him recover. The Aquafor seems to be helping, as well as trying to stay off his feet! The blood work right after the first 3 days of full dose Stivarga showed CEA had dropped about 100 from 898 to 786 but now with the time off and back on at 2 per day the last CEA jumped up to 1126 so I'm worried that the reduced dose is not enough to do any good. We are thinking of contacting one of the Cancer Centers of America as they do this HIPEC so many have talked about on the board here. I don't really know what makes you eligible for that and have searched but I'm not really clear on whether it would benefit my DH or not. We did talk to Mayo Clinic but they recommend he stays on the reduced dose of Stivarga and are going to see him in 2 months. It's hard to wait and do nothing when the CEA is going up. We have much to be thankful for - 3 children who live close, we all went out to breakfast today together which my DH LOVES to do on Sundays! Blessings to everyone here today.

[Bev G]

Hello Nodak.

I'm sorry to hear your DH is having such a rough time. HIPEC is for the folks who have abdominal (peritoneal) metastatic disease--the lining of the abdominal cavity and/or the OUTSIDE of abdominal organs. It seems from your signature that your husband has liver involvement? Is his metastatic disease limited to his liver? Is he resectable? You might want to think about going to Sloan Kettering In NYC if you're able to see about the implantable HAI pump which delivers chemo directly to the liver. If your DH has a lot of cancer outside of his liver he might not be a candidate for this treatment. If the issues are confined to his liver, this might be a good option for him. I'm sorry to hear the Stigarva isn't going all that well. It is a very, very tough drug, and it is very hard on the liver. I hope his doc is checking his liver chemistries at least every couple of weeks.

Very best wishes to you,

Bev

PS I'm so sorry, I just read your signature more carefully and see that your husband has lung mets as well. I know that Julie had liver and lung mets and was very successfully treated at Sloan Kettering. Perhaps she'll stop by with her thoughts.