My derm has recommended Erivedge for persistent recurring basal cell carcinoma. What is your experience with the side effects and the effectiveness of the drug to cure bcc?
Hello john691. Sorry no one has answered your questions to date. I have not personal experience with this type of cancer or this med, but am giving you a link that explains the side effects etc.. Maybe now I have answered, someone that does have this will answer & give you more info about their experience with this medication & how effective it was for them. Hoping you are better & wishing you the best...
I have been using Erivedge since March 12, 2012 (7 months). I was fortunate enough to have a very quick response. I had hubdreds of basal cells, especially on my back and shoulders. Those two areas have cleared up very well. I had a few on my neck and face and those have cleared as well. For whatever reason, it seems the ones I have on my legs are having a much slower response. But all in all I am very happy with the results thus far. I am supposed to be on it for 18 months. I would hope and expect, given the information from the previous studies that I will see more results.
As for side effects, I have been very fortunate in that area as well. However, I am losing the hair on my head and all the hair over the rest of my body. I have also experienced some pretty painful muscle cramps at night in my legs.
If I can handle the side effects, some of which are still possible, I hope to be able to stay on the drug for the full 18 months. I guess the down side is that I read that people who got off the drug after using it for 7 months or so, had a reoccurance of the basal cells after about the same amnount of time being off the drug so that is rather disaapointing. But for me I am happy to be gettng to a point where there are not as many-for the time being and can stand a better chance of treating the more stubborn ones.
I hope this is helpful.
All the best to you.
I've been taking Erivedge for two days for BCC. I have to take it for life, but no side effects yet..Stevan, do you remember how long you took it before ya started having side effects? I'm so nervous because I have a ton of hair and hate to lose it... but I know it's coming! I know people who have taken it, but couldn't deal with the side effects so they dropped it. I know it is suppose to be very effective, but everyone is different. My little boy has bcc BAD, but he can't use it:/ john691 I'd go for it!! :)
I have Gorlin's syndrome, which manifested itself, in my case, with kerato cysts (non-malignant) to the facial bones and with numerous BCNS leisions, largely on my trunk, but also on my face, interior of my right nostril as well as on my scalp. My first surgery for the cysts was in 1959, and the skin leisions began appearing around 1974. Well, Erivedge has been a miracle drug for me. I started taking it on 8/1/2012 (150mg/day). Pretty benign side effcts at first, but after a couple of months I began experiencing significant hair loss, leg cramps, and loss of taste,all acknowledged in the literature.I have also experienced very uncomfortable, periodic cramping to both hands and in my left forearm, which may be unique to my case. Because of the nature of Gorlin's syd, I will be taking Erivedge for the rest of my life and am thankful for Genebtech's fine work. Good luck to you, my friend.
Do any of you know how a doctor can tell if atypical BCC is gone or in remission? I guess it sounds funny, but that question has been bothering me a lot. Each time they cut one out- more pop up within 4 weeks.
I had the original one for about 30 years. I tried and tried to get it off. I even had annual full body skin exams-and I'd ask about my BCC that was right in front of them and moved with my flapping lips. They just thought that it was a zit and didn't do more than wiggle the top and talked to me about vanity, blah, blah, blah.
How can you trust a doctor? How can you tell if he is telling the truth? I've tried to look up the ACS to get info-but all I see is how to do a fund raiser for the ACS or donate my hair for somebody else.
I followed a study for approximately 6 months with Vismodegib.
Here I will share my experiences with this new drug aka Erivedge.
This is my personal meaning, and experience, and I have to appologize for my English.
If there are any questions regarding my post, please feel free to message me.
I try to explain all step by step, in a very simple way.
Before using Vismodegib I had some basalcelcarcinomas in my face., especially on my nose.
The first month was without any complications, but after the 2e month I had some hairloss, tired during the day, feeling sick etc,etc,
The 3th month, my energy was flewing down by the day, and my face was mutating in a very strange way,
From the 3th untill the 6th month this continued, and after that the specialists decided to stop the treatment, and I went in to some operations.
End result was that I lost a big part of my face, and now I am busy to have some reconstructions and recovery.
The doctors told me that I would have some side effects from the Vismodegib cure at mindest for 6-7 months, after stopping medication.
Later it turned out that because of new information from the Manufacturer of Vismodegib the side effects would stay longer, and even up to 24 months.
I am not sure what to think about this medication, but for me it did not went the way I was hoping for.
The fact that there is no information, nor on forums, nor on the manufacturers website, makes me a little bit confused.
Also there is no information regarding other cures, comparing with vismodegib availlable.
Again, this is my personal experience, and I hope there are more people out there who can share their information about Vismodegib.
I am very curious.
Thanks for reading
Hi! I wish you all the luck! In my opinion I do not feel this drug is good for those who have a few surface level basal cells (less than 30-ish? Small ones) like me. I was on it for only 7 weeks- lost all my hair. My hair didnt start to grow back for 2 months. (Very short now-been 6 months I have been off) ALL my basal cells came back bigger than before. So now I'm bald with basal cells! I have been reading so many blogs with the exact same turn out as me. I can see how people who have major deformities from basal cells would benefit however.
And I feel so bad that they need to stay on it for much longer periods of time! I'm praying for you guys! It was not the miracle drug I was hoping for but I hope it is for others.
I also got major muscle spazams and I was sick from the chemo for 2 solid months after- tired, nausea - basic post chemo stuff
One more IMPORTANT note!:
Genentech said "they could not guarantee my hair would grow back at all" when I called their hotline. Two months prior I asked same question ' they responded it for sure would grow back. I'm thinking they needed to reword what they say to patients due to negative results!
I've been on Erivedge for 14 months. My advanced BCC has healed nicely. My oncologist has told me I may need to stay on it for life as there is no long term data available. I do not have Gorlin's syndrome. I have the side effects of severe muscle cramping, fatigue, hair loss and total loss of taste. I have been off it for a month for a drug holiday just to be able to taste some food for a while. But my taste buds have not returned yet. Anybody know if and how long it takes for them to return?
Also I see posts regarding the BCC recurring after stopping treatment. Is this in people with Gorlin's?
I have been on Erivedge for three weeks. I am having some side effects no energy, stomach pain, frequent urination. However, I have had five MOHs surgeries and my last biopsy showed bcc was back in the same place at the corner of my left eye. Aside from the 5 MOHs I have had every other procedure to remove the cancer from the same area except radiation and that is not an option. All of my care has been at The Emory Clinic in Atlanta,GA. I have had very good care from my dermatologist And the doctor That puts me back together after MOhs he is a specialist of the eye and eye orbit. Another MOHs again this would have been my 6th on eye orbit and another new bcc on my left side of my nose had me looking for any other treatment when I read about Erivedge. I am being treated now by an oncologist. I know this may not be the magic pill that will stop these cancer cells from forming but I really hope it will slow the growth of the basal cell and squamous cell cancers.
GOOD LUCK to all of us. I do have a question how do know if it is working? I think I am seeing changes in the size and shape but it maybe wishful thinking.
I will try to answer this question as fully and honestly as possible. I do not want to sway anyone one way or the other for considering this a choice in treatment. It is a very SERIOUS agent, not to be taken lightly.
I am 47 and had been going through a Triple Negative Breast Cancer (TNBC) "journey" when I was diagnosed with ADVANCED basal cell carcinoma on most of my entire left skull. Understand that advanced basal cell and basal cell are two completely different animals.
I have a port for IV chemo, a very strong, caustic protocol, ACT protocol, five and a half months treatment for the TNBC. I'm going to refer back and forth from TNBC to ADVANCED basal cell cancer to try and give an analogy for severity and chemo-treatment tolerance. Hoping to round out just how difficult the Erivedge (Vismodegib) experience was.
TNBC chemo made me feel bad, especially the "A" Adriamycin component. Nulesta is a subcutaneous injection given within 24 hours of Adriamycin to assist your immune system not to plummet. It is one of the worst parts of TNBC treatment, but short-lived. It only makes you feel sick, bed-ridden and as if your bones were going to split/burst open any second for one or two days. The aching is very very uncomfortable. At this point, you realize that you certainly are a cancer patient.
Indeed, I lost all my gorgeous, flowing thick hair. Lost eyebrows, lost eyelashes, lost body hair. It makes you chilly, but I've gotten used to it. I didn't get any wigs. I use do-rags ironed crisp and folded perfectly as well as soft cute surf hats. Sometimes I go bare headed.
Got a double mastectomy with immediate reconstruction. The tissue expanders are terribly uncomfortable. Sometimes, for the first three months, I wouldn't know where or how to place myself. I am thin and they say it is worse for thin bodies. Ultimately, plain old over-the-counter ibuprofen helped that pain. I am in my seventh month with my double breast tissue expanders. They have been fully expanded for 4 and a half months or so, and are uncomfortable almost every day.
Now, onto Erivedge (Vismodegib). I took Erivedge for 6 and a half months. Thankfully, I had purchased Long Term Disability a couple years ago, so I can REST REST REST and use my energy to heal and fight these two dreadful cancers. If there is ONE, only ONE word of advice I want to pass on, it is this: GET A PALLIATIVE CARE CONSULT. I can not say this with enough empathy and conviction. I consider myself one of the toughest, strongest physically "can take more torment" than 99% of the population kind of person. I am telling you... Erivedge brought me to my knees. I was sick every single day. Not kind of a little bit sick, but SICK in bed, EVERY SINGLE BONE AND MUSCLE ACHED, every single day. Sick, that my face hurt. Sick, that I couldn't even walk down the hall to make myself an English Muffin. Sick, that it was AGONY to try and turn over half way to reach for my bedside light. Sick, that I actually got bed sores. Sick, that I thought maybe I would die in my sleep.
Now, let me express that I am humbly grateful to have even had the opportunity to have been a patient able to take Erivedge. Being on medical leave from a large city hospital, allowed me to make monthly payments for my BC/BC health insurance. Genentech, the producer of Erivedge also assisted my attaining their medication at a reduced co-pay because I made less that 100k last year/this year. How fantastic is that? Believe me, it has been astounding to me, to be one of the patients given the opportunity to take this cutting-edge, cell-specific, hedgehog-pathway medication. It's truly miraculous.
Ok, now what? Now I've been off of it for a mere three days. I've been "warned" the ADVANCED basal cell lesions will grow back. How long will it take? I don't know. I am now gearing up for tissue expanders to be placed on my skull, under the skin that is. Two giant rectangles. I need to grow skin for a gifted plastic surgeon to have something to work with/material/flesh once the amazing expert MOHS surgeon removes and removes and removes the cancer.
Back to Palliative Care. I have been under a Palliative Care Doctor's care for about half of my Erivedge experience. I ended up with around the clock opiate medicine, and low-dose steroids. I gained ten pounds, perform ADL's (activity's of daily living), and be out of bed for several hours a day. So the excruciating pain is managed.
There are still side effects I didn't address such as horrific, muscle spasms of my legs, forearms and abdomen. The kind that wake you up MULTIPLE times a night. In agony of burning hell. The frequency began decreasing around month 4.
Not in severity.
Everything tastes strange. Even water tastes weird. Just sitting still, the mouth has oddness to it.
I remain hairless except... my eyebrows and eyelashes grew back! Yay.
Erivedge does something to your feeling of urinating. I can't quite describe it, but I drink a LOT of water during the day. On Erivedge, it almost feels as if the bladder was sleeping. NOT in a UTI/bladder infection sort of way. It didn't feel like that hesitancy, urgency feeling, but the bladder felt strange.
So people, seriously WEIGH the risks and (unknown) benefits. Thankfully, my job is there for me. I am very, very fortunate for not being threatened with job-loss. I don't have a young family to take care of. I live by myself and my little angel doggie.
I purchased private Long-Term Disability so I can pay my bills.
This treatment could easily put someone over the edge. It is NOT a magic capsule. It is NOT to be taken lightly.
Today is my day 39 of using Erivedge. I am a54 year old female and have experienced only minimal hair loss. My big side effects have been nausea, vomiting, extreme fatigue, and most recently, within the past week has been loss of taste. I have tried to overcome my symptoms with interventions. I use an ice cap on my head every night, too slow hair loss. I take anti-emetics twice a day to help curb the nausea and vomiting. I've also increased my intake of daily vitamins including the B vitamins to help combat the fatigue
I was on Erivedge for 11 months because of BCC. It has all disappeared. I have been off for almost two months now. I experienced almost all of the side effects.
1. Hair loss - lost most of my hair on my head and all hair everywhere else, including eye lashes, whiskers (liked not shaving for 8 months).
2. Loss of taste- at about 3 months everything tasted metallic, some things more than others, stayed away from bread products, dairy products tasted gross. I lived on smoothies, packed with fruit, greens, protein, grains, etc. Lost 25 pounds all together, not really a bad thing there.
3. Spasms- my legs have finally stopped spasms and therefore night cramps, in some ways this was the worst part and yet made for some entertaining situations when I got multiple cramps in public.
4. Diarrhea- occasionally
5. Constipation - rarely
I am very happy with the results and now that I have my taste back and see my hair returning I'm even happier. Its all about mindset, know that it works and that it beats the hell out of multiple sugeries. Have a sense of humor and go with the flow. Food has never tasted so good and its Christmas. My hair is growing back, I am lean not skinny because I ate really healthy, no bread or dairy. Look at the end result and think of that when it gets hard and you'll be fine.
Good luck and feel free to contact me.
I just finished taking Erivedge from 9/16 to 3/17. I had about 30 or so long term active lesions on my shoulders, neck, cheeks, and forehead confirmed by biopsy/previous tx to be BCC and 2 squamous cell carcinomas (forehead and cheek). I had one BCC that was particularly bad on my left neck under the ear that required a skin graft from the hip area. When that one started back up it was time try something else beside more surgery which led me to this mdication.
This is my experience only as I don't want to sway anyone one way or the other. This is but one data point for a relatively new tx.
I am 57 yo male who is former military and very fit. Running 6 miles a day in the sun (pre-sunscreen days) I can say with confidence my skin cancer issues are related to sun exposure in my 20s and 30s.
Starting the drug was uneventful and it took roughly 2 months to start feeling anything from this medication. The first sensation noticed was that water tasted a bit salty. Sort of like colonoscopy prep... yuck. lol Then certain foods began to lose their taste. Some foods and drinks never lost their taste like coke, milk, oatmeal and chocolate. Lemons in water helped a lot. Lemonade was my friend. Other foods tasted like cardboard. I didn't find this issue to be that big of a deal.
The taste thing stayed consistent all the way through tx. Probably about months 4 to 6 I started ted to get some minor muscle cramping primarily in the lower legs and feet. The cramps were annoying for the most part and were relieved by stretching the muscle... just like stretching out a charlie horse/pulled muscle for those who may be athletic.
I did not lose my hair or any weight. I was not tired nor did I have and GI issues. I had to actually get a hair-cut mid way through tx. My sideburns did get thinner though. And my facial hair growth slowed considerably. It may be due to my age, but I think I may have suffered a little bit of short-term memory loss. We'll see if things return to normal post tx. So far I want to say "yes" but that may just be the optimist in me.
Post tx my sense of taste returned within 4 days. Muscle cramp issues stopped completely by the 5th day.
The doc took a biopsies of my neck and a couple of other places to corroborate what visually looks like a complete "cure" whatever that my end up being. Negative on the biopsy results. It's all gone for now. Hope it stays that way. If not, from what I have read I can go back on the medication as long as I can tolerate it. Hopefully not but it is nice to have options.
Take care and I wish positive outcome to you all. jim
- Erivedge Information for Consumers
- Erivedge Information for Healthcare Professionals (includes dosage details)
- Side Effects of Erivedge (detailed)
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