STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

[WifeOfMike]

Started this club under 58 yr old Hubby's signature in hopes of him one day lurking/ researching/ posting. Should have known better after 34 yrs, he will NEVER do this himself. Throughout his ordeals, it has been me who has the courage to research, monitor & inform him as to what to TRY & expect, as BEST as I humanly can. I want to THANK all of you, for being a guide to us in the past. Now I feel it is my turn. Throughout chemo, he has been able to tolerate all side effects like a champ, keeps up a stationary bike 7 mile routine & healthy diet/ appetite & normal 6 day/wk work schedule. We have kept secret his disease to all except family & a few close friends, and he has had nothing but compliments from outsiders, as to his miraculous healthy appearance (except for the annoying rash Erbitux caused sporadically). HE IS MY HERO.

I will try & describe his ordeal with Stivarga(if you will allow me, as a caregiver/ not patient). Hubby started line 3 Stivarga full dosage (4 pills) 12/3/2013. By 12/17 he had almost imperceptible light pink on 1-2 areas of bottom of foot, by 12/20 he was full blown grade 3 nasty, black/ green/ orange/ yellow blisters (again, shocking/ painful) covering the soles, sides of feet & between toes & was bedridden thru Xmas. Having tried, as usual to research everything about each chemo cocktail/ AES..... I had NO idea HFS would come on like a freight train. His head nurse had to look up on the computer to compare his feet with photos, something that shocked us BOTH! It is ONLY then both 1st & 2nd opinion Dr's let us know MOST patients cannot tolerate full dosage! Immediate stoppage of Stivarga until all signs of HFS gone.

After fact UCSD Dr's nurse had following advice. PLEASE heed this, as it may save you or your loved one excruciating pain. Use these as PRECAUTIONARY measures, NOT chasing the dragon. Avoid hot water/friction as best as possible. Soaking feet (or hands if an issue) in COOL water 3X's/daily reduces blood to areas (it is where capillaries are closest to top) as medicine tries to escape & come to surface. Slather heavy emollient creams & let air out as much as possible/ elevate on pillows. DON'T RUB/ massage... it causes friction! I got thick fluffy socks (for diabetics, with WIDE tops to get over painful blisters), lambskin slippers for initial care while bedridden to amble to potty). Jell inserts for his sandals & tennis shoes (when he could stand to finally get them on). When he returned to work, he slathered up mornings (and he hates cream), put on sandals/ jell pads, did another soak/ slather mid day & immediately after work, where I insisted he stay off feet as much as possible until following morning. NO bike, no standing at work (we own our own biz) and we feel working and staying as close to his normal routine is helping keep his mind active/ ward off depression.

Several weeks later after multiple debates with Dr's/ nurses, he started back on Stivarga 3 pill dose/ day. Although he did have a couple of incidences of light pink between 2 toes, 1 on his foot & a callous like growth on palm between 2 fingers (again capillaries/ friction play a part), he was able to maintain 3 pill dosages throughout his 4 month/ 3 day Stivarga routine, until we heard those dreadful words " the disease has progressed and we have to go to the next level of CRC playbook". I guess we (hopefully) bought another sliver of the time clock and pray did not do any more long term damage to the rest of his healthy organs/ cells than can be avoided. I must confess several major fubars occurred with his Stivarga routine. NO baseline CT was established. We had 1 month fiddling with 2nd opinion of disease/ OK for Stivarga as line 3, between Line 2 and Stivarga. Last CT scan was a nightmare, taking another month and 4 conflicting reviews of CT scan results, but CEA rose and both Dr's agreed it was time to move on.

Vicki (the wife of Mike)

[Misha]

My thoughts go out to the others taking this drug. Thank you for sharing your experiences. It's a tough one!

My mom finished her second cycle on 3 pills for 21 days last Friday. There were some similarities with the first cycle. The first two weeks aren't bad relatively speaking. She experienced heavy fatigue and slept a lot. Her appetite was very suppressed and she developed mouth sores. The last few days she experienced another downturn, starting with chemo brain, which resulted in her refusing food and water. My dad said that it was a constant battle to get her to drink water, tea or ensure. We thought that once she was off the pills, she would bounce back, but it wasn't happening and on Sunday (Mother's Day) we decided to take her to the emergency room. The hospital staff said that she was severely dehydrated. Her heartbeat was also way up and oxygen a little low. They hooked her up to the IV and she bounced back. The next day her onc stopped by and checked all her readings. They were good, so she was released. One odd item was that her platelets have been very low (30s) the past two weeks. We have been watching the readings, but continuing the chemo. Her onc told my dad that he thought the actual levels were probably twice as high as the readings and the readings were abnormally low due to the way they take the readings. He explained it to my father, but it got lost in the translation.

If all goes well she is scheduled to go back on Stivarga this Friday. She still has a little chemo brain and the weight loss is a concern, but according to her a lot of that might be due to the pain she gets from eating, which is caused by the large multilobulated growth in the lower abdomen and pelvis pushing against her organs.

I mentioned to my father that she might try taking her pills in the evening, but the instructions say to take it in the morning with a low fat breakfast. Does anyone know if the makers of Stivarga allow for an evening dose?

[Bev G]

Hi Misha,

I know next to nothing about Stigarva, but I do know this. Our friend Ashlee (who is currently in the hospital) felt she would tolerate Stigarva better if she took it at night instead of in the morning. He OK'd it and she switched it to nighttime. I believe she did feel better, and there was no apparent poor consequence of the time switch.

Bev

[WifeOfMike]

Taking Stivarga at the same TIME daily and with food is the key. Low fat directions from nurse was: 2 slices white toast/ 1 tsp low fat margarine/ 1 tbsp jelly & 8 oz milk.... OR... 1 cup cereal, 8 oz skimmed milk, 1 slice toast/ jelly, apple juice & cup coffee or tea.

HOWEVER my hubby is spoiled. He starts EVERY day with a hard boiled egg, High Energy chocolate Boost drink, cup Greek Activia yogurt with fruit, and a blended smoothie made of raspberries/ blackberries/ strawberries/ blue berries/ bananas/ coconut milk/ Greek yogurt/ flax & milk thistle. I have tried hard to keep his appetite going throughout his disease. A challenge in itself. I have to get creative with sauces & spices on fish (my youngest son catches fresh), chicken and occasional beef; lots of loaded salads with kale, spinach, and a whole slew of fresh veggies; broccoli & tons of red grapes for dessert (and he loves ice cream cones). All of this has helped keep him from losing or gaining weight and keeps his energy level HIGH.

He has been lucky and has been able to maintain working. BUT, I did notice he came home from work & napped before dinner a little more frequently and because of the foot syndrome nightmare had to give up his stationary bike during Stivarga days. I bought him the stationary bike when he was diagnosed and learned exercise is a key factor in helping tackle this disease long term.

His voice was "husky" and he had a "tickle" that wouldn't go away UNTIL he stopped Stivarga. Towards the end he felt like he had a "cold", and he is a guy (other than CRC) that does not get sick. I also noticed his energy regained and he has been pedaling away nightly (even lost peddling count watching TV and did 9 miles- usually does 7 ). He has had some chemo fog days throughout all chemo cocktails...... I noticed a little more during some Stivarga ones. I have been around him 34 years, so I know him like a well loved book

Of all the chemo he has had, including the clinical trial he is now on........ Stivarga was by far the toughest overall. Hope this helps somebody.

Wife of Mike, Vicki

[Misha]

Thank you for the feedback Bev and Vicki!

[WifeOfMike]

WORD OF WARNING......

At the FIRST sign of tenderness in feet, no matter how slight the pale pink (or no color difference is) TELL THE DR.
We waited a couple of days ( last couple of cycle & he thought he could tough it out) BIG MISTAKE!!!!
It went grade 3 in the blink of an eye and was THE most devastated he has been on chemo to this day. Completely bedridden & The nastiest blisters we have ever seen!!!
4 pills (full strength) NO ONE CAN TOLERATE

hugs,
Wife of Mike,
Vicki

[Sharona]

I started on Stivarga two weeks ago, three pills a day, and then began four pils a day this morning. This was also my scheduled appointment to see the onc. The first four days were okay, but then I got hit by a freight train! I have been exhausted, worn out, and unable to do much of anything except sleep. My counts are good, and I have been keeping my hands and feet moisturized. The onc has stopped the pills for the next seven days. Then I will begin with two pils then three pills, alternating days. After two weeks I will see the onc for reevaluation.
Is there anyone who has had a positive experience with this drug? Ashlee and Candy are both having a tough time right now, as is Gwen. Thanks to Vicki and Misha for sharing. Please update as you can.
Hugs to all,
Sharon

[Bev G]

Hi Sharona,

I have no personal experience with Stigarva, just what I have learned from my friends on the board (mostly Ashlee)---please make sure your onc keeps a VERY close eye on your liver enzymes and your blood pressure! I've learned from Ashlee and several other pals that these things can change very quickly, and the situation can become dicey with little warning. I'm happy to hear your onc started you on 3 pills, and not the typical 4. I know Ashlee's doc took her off of the drug for 1-2 weeks, hoping her body would "re-set"...I know she felt much better, but then her liver enzymes hit the roof. I think the consensus opinion for her still is that this WAS NOT the Stigarva, but tumor(s) blocking her common bile duct. I do think they have decided her tumor load increased on the Stigarva

Wishing you all the best on this drug, Sharona.

Hugs to you,

Bev

[Misha]

Thanks Sharona and Vicki for sharing your experiences. I cannot imagine taking 4 pills of Stivarga a day. 3 pills is brutal as is.

An update on my mom. She is currently on week two of her third cycle. Recap of her first two cycles was that she bonked hard the last few days of each and had be admitted to the hospital for overnight observation. She bounced back quickly the first time, but the second time she did not improve much on her week off and we thought that she would not be able to continue with Stivarga. She eventually started to improve and started her third cycle a day late. On this cycle she is less fatigued (relatively speaking). Her first two cycles she slept constantly. The warm weather has helped and she has been going outside to enjoy the yard. She has expressed more desire to do activities, but some times, her energy does not allow her to do so. She has a little chemo brain no and then. The biggest challenge still is eating. My dad struggles daily to get calories in her. I was at the grocery store this weekend and picked up some dried mangoes near the check out line and offered them to her. She obliged, but said that they tasted like gasoline. It's very hard to see someone who loved eating be so turned off by food.

My dad bought a blood pressure / heart rate monitor, so he could check her vitals every morning. Last week her heart rate and blood pressure have stabilized. Also last week she went for her second abdominal draining and the sucked out 3.2 liters of fluid, which helped her feel much better. The doctor who did this procedure was a young man who installed her chemo port last year. He was very pleasant and took time to explain everything and answer their questions. He said that it looked as if her multilobulated growth was shrinking into a ball. Going forward, they will request that he do the drain procedure.

At her weekly visit to her onc, he was surprised that she looked and sounded much better than the prior week. Her platelets were 170, up from the 30s the past few weeks.

Overall, some good news...

[WifeOfMike]

Glad you ladies are hanging in there. Mike lasted 4 months before tumors decided to march on.
Glad my messages were of use. Best of luck!

Wife of Mike,
Vicki

[Sharona]

Thanks for all of your advice about the Stivarga! When I saw the onc two weeks ago, she admitted that I am the first patient in the clinic to use this drug. I realize that each person reacts differently, but your experiences are much more helpful than reading of the possible side effects on the info that comes with the drug.

I took a week off and started back last week, alternating two pills one day, three the next. Thus far the side effects have been minimal and I pray that they stay that way. I will see the dr again next week and find out where we go from here.

Hugs,
Sharon

[WifeOfMike]

Best to remember this one.........
EVERYBODY react differently. Hubby cruised thru some chemo drugs, that others had issues with. Some major, some minor
YOU may Cruise thru this one his tootsies couldn't tolerate.

I like to research side effects, just so I can keep eyes peeled, and perhaps have solutions on hand JUST in case (hoping to never use them)
I have multiple bottles of Imodium......... I'll sell cheap, hahahahaha!
Like a Girl/Boy Scout...... it is best to be prepared.

Here is wishing you ALL much success with Stivarga!!!!!
Wife of Mike,
Vicki

[Lisahopes]

I'd like to share this here as it may help someone.

I live in Germany where Stivarga was pioneered by a German company.

Since my mom was living in Africa and the drug was not available there, I obtained it for her through a German oncologist.

My mom took it for a month but her tumours kept growing. She was more exhausted than ever. She managed all 4 tablets.

I actually spoke to the project mamager for the drug here in Germany and was told that they recommend the 4 tablets because there is no evidence that the lower dosage has any effect on cancer.

In other words, the 4 tablets is definately ideal.

[Lindaelizabeth]

Hello all! Just started Stivarga today. Took all four pills of first dose about five minutes ago. So far so good! Since no one has posted on this thread for a while, I will try to share my experiences and keep it going. I'm thankful for everyone who has shared so far. I am putting lotion on my feet to help prevent hand/foot syndrome because of the stories I've read. Hopefully, I'll have good news to report! Interesting to note I talked to two oncologists before starting treatment. One said to start at full dose of 4 pills a day, the other said to start at two pills for the first two weeks, then three the third week and then go to four pills a day in the second cycle. I am choosing the four pills a day as that is what the Stivarga website recommends, thinking I should go for the full benefit if possible. Blessings! Your prayers are appreciated!

[WifeOfMike]

BEST of luck to you Linda!
I hope it helps you kick Cancer's butt!

Vicki