The Colon Club

bumping this thread after having read through all nine pages.

Two nodules in my lung grew to 2.5 cm on my latest scan and I have lymph node involvement almost everywhere.

Trying stivarga next. I'm guessing they don't make any changes to a drug like stivarga once it's out so I'm assuming I can expect the same side effects.

Anyone currently on this that would like to share their experience???

Hi everybody,
My boyfriend has just started on stivarga after 3 years of battling colon cancer with metastasis in his liver and his lungs. They got rid of his colon and liver tumors and some of his lungs tumors through ops but it is still there. He's been in A LOT of pain for months due to some liquid in his lungs so he has been through too much already. Reading about stivarga's side effects is scaring me big time. Hope it helps reduce his tumors and especially his pain. He's already lost almost 2 stone so I don't know how bad it's going to be when he loses the little appetite he still has.
Please send your love and good wishes. We need it. And hope everyone who is going through a similar situation gets well soon x
Maria

Just thought I would put in an update. First 10 days of my first cycle went pretty well. Pretty tired most days was really the only problem.

But on Day 11 I woke up with a rash over a good chuck of my body, mostly everywhere excepts my face and chest. Still took my 11th dose on that day, knowing I would see my Nurse practitioner later that day. She consulted with my oncologist and they stopped my treatment. Two days later rash is going away, and I have an appointment in two days when they'll decide if it's okay to resume treatment.

I was in a trial for Stivarga a few years ago, for use of Stivarga as a second line of treatment for mCRC. I had the exact same experience...11 days fine and then a whole body crazy rash. I was pulled off the trial, because it was about dosage and they couldn't lower my dosage or make any changes for their study. It lowered my CEA quickly, though. I would use it again , maybe at a lower dose, in the future.
FYI...it took about a week for the crazy rash to go away.

HI, all, just to give a little info as to my husband's experience. He has stage 4 colon cancer metastazing to abdomen. Avastin worked for a few months, but then didn't, and cancer is growing aggressively.
The Onc put him on Stivarga. We were both wary of it, because of all the side effects we have read about, but he wanted to try it. He is an outdoorsman, and doesn't want to give up. The chemo at least kept him going, but when he was off it a few weeks, he became very weak.
He has been on Stivarga for two weeks, starting his third. So far he hasn't had the bad foot and hand problems, which is good because he got neuropathy during the first round of chemo. He is vvery tired, and has almost lost his voice. He needs very sensitive toothpaste, and has no desire to eat, so his dr has ordered med to augment his appetite. He has lost 14 pounds since May, that he didn't have to lose.
He also has bad night sweats, but that may be from his body fighting cancer.

Male, 73.
Diagnosed August, 2016 with Colon Cancer.
Underwent surgery, took most of the tumor in right
side of his colon, and nearby lymph nodes.
Adjuviant Chemo (not sure what) 11/16-6/2017
8/18 -found out cancer had recurred, and had spread to
stomach.
Had colostomy 9/19
Chemo Avastin 8/2018-4/2019
Started Stivarga 5/15/2019

Thanks for your post, Debra. I was looking for someone with experience with Stivarga. Your husband’s side effects sound similar to my what my husband is experiencing. He’s been on it for 2 months and his oncologist is having him start a 3rd cycle. How is your husband doing now?

If there is anyone else on Stivarga, I’m curious how long you’ve been on it and how it is going for you?

He is on his third cycle. He has trouble eating, and has pretty much lost his voice. We were referred to a voice therapy practice, and they said his voice problem is because he has lost mass, including in his vocal cords, and they are going to do a procedure to plump up his vocal cords, so he can talk. He is still in pain, has constant headaches, can't settle down, but he is still up and walking. He is very sensitive to smells now, and is having trouble making himself eat, but he is trying, and we have gone out a few times the last week. He can eat bland things, like oatmeal, grits (we're southern, lol), and cereal. He also has a few Glucerna drinks a day, so hopefully will not lose too much more weight.

Everything you are describing is exactly what my husband is experiencing. He just finished up his third cycle. He will start the 4th on Thursday if the doctor tells him his blood work is okay for it when we go on Thursday. His voice did the same thing and he was referred to a specialist, but then it got a little better on the 3rd cycle so he didn’t go to the specialist. Whenever he has his off week, his voice comes back. He also drinks protein shakes to keep up with lack of eating. He is extremely fatigued on this Chemo.

Of course, I want to know how long they will have him on this. After reading through this topic, it doesn’t seem like many stay on it a long time.

Hey everyone . . . just wanted to chime in here, as my husband starts Stivarga (full dose) this weekend . . . the goal is simply to shrink down this para aortic lymph node that is inoperable, but wreaking havoc on his body . . . I will definitely post any thoughts or observations that we have, but I do have 2 quick questions for those of you with experience:

1. Should he take his dose at night (before bed)? I noticed a few people suggesting that on this thread . . . any thoughts either way?
2. The paperwork from the doc says not to apply anything to a rash, but to call the doctor if you develop a rash. Several members posted suggestions for creams, etc., that worked for them (or their loved ones). Any suggestions??
Thank you all )
jep

jep wrote:Hey everyone . . . just wanted to chime in here, as my husband starts Stivarga (full dose) this weekend . . . the goal is simply to shrink down this para aortic lymph node that is inoperable, but wreaking havoc on his body . . . I will definitely post any thoughts or observations that we have, but I do have 2 quick questions for those of you with experience:

1. Should he take his dose at night (before bed)? I noticed a few people suggesting that on this thread . . . any thoughts either way?
2. The paperwork from the doc says not to apply anything to a rash, but to call the doctor if you develop a rash. Several members posted suggestions for creams, etc., that worked for them (or their loved ones). Any suggestions??
Thank you all )
jep

If you do not get much of a response, you might want to start a new thread with your questions. This threat has been around for a few years, it may not get a lot of attention.

Good luck,

Lee

Thanks Lee! Probably a good idea . . .
jep

Hi all,

I've been on Stivarga since January. My oncologist started me on 3 pills (120mg) per day for 3 weeks on 1 week off. I started to get alot of the side effects that you all have mentioned, so he cut me down to 2 pills (80mg) per day. Since the reduction in dose, the mouth sores have gone to just sensitivity around my tongue, but I'm still dealing with exhaustion and lack of appetite. My last CT shows stability with the cancer, but my blood test shows that my CEA went from 31 (in June) to 68(in August) .