Home Forums Melanoma Diagnosis: Stage IV Zelboraf survey

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  • #20552
    dallyup4
    Participant

    Is it okay to ask these questions Catherine?

    Just Curious….

    How many of you are taking Zelboraf?

    For how long and how successful has it been?

    How many are taking a reduced dose…..

    Why?

    For how long?

    How has that worked for you?

    I have been taking Zelboraf for 14 mos.

    NED as of 8/8/12

    Full Dose

    Have had nearly all the side effects, mostly: diahrrea, joint pain, rash and hair loss.

    Would love to reduce dose but Dr. keeps saying “As long as it is tolerable, keep taking full dose”.

    I also want to know what people are doing that don’t have insurance, my husband has great ins. which pays for it but he is nearing retirement age and I am wondering how we will pay for it after retirement?

    Thanks everyone

    Sue

    #55914
    NoahBug
    Participant

    I’ll answer these questions on behalf of a family member who is taking Zelboraf, if that’s okay :)

    For how long and how successful has it been? Into her fourth month now. Two lung tumours reduced by at least 90%, and one pelvic tumour has also reduced – though I’m not sure how much.

    How many are taking a reduced dose….. Nope, still on the full whack.

    Have had nearly all the side effects, mostly: diahrrea, joint pain, rash and hair loss. Only side effect so far has been the photosensitivity

    It’s really encouraging to hear that you’ve gone 14 months and it’s still working!

    #55915
    Dick_K
    Participant

    On September 3rd, I will have been on Zelboraf for 2 ½ years and PET scans stopped showing any activity on December 16, 2010. With the exception of forgetting to take the pills twice, I have been on full dose the entire time.

    As to side effects, I would have to admit that they were never debilitating but at times some were very painful; some came on very quick and I still have them and some have pretty much disappeared. Almost immediately, I developed a rash on my entire body but never on my face and the rash is still evident today. Extreme photosensitivity also was quick to start and continues. I’m not sure when it started, but I did have body hair loss. I developed many small warts on different parts of my body. Those that were sore were taken off and biopsied. One such wart turned out to be a cutaneous squamous cell carcinoma that was successfully removed with Mohs surgery. I developed neuropathy in both feet and it was very painful for a time. There was also a period when my ankles and feet were swollen. The swelling is much better and is just a minor annoyance on my left side. As to joint pain, there are mornings that it is difficult to get going especially up and down stairs; my knees were sore prior to starting Zelboraf (arthritis?) so I am not sure of the cause.

    As to cost, my insurance pays for standard of care expenses. Since I am still part of the phase II trial, the cost of the medication is provided to me.

    Dick

    #55916
    marta010
    Participant

    Answering on behalf of my husband:

    On Zelboraf since April 2012 and has had significant reduction in lymph node tumors.

    Taking full dose – side effects originally were muscle/joint pain which has greatly subsided. Thinning/loss of hair. Removal of several warts/keratosis. Photosensitivity continues to be an issue but he mainly avoids being out in the sun.

    #55917
    dallyup4
    Participant

    Thanks for your replies. I guess I will contnue on full dose. As with you, it is not debilitating but there have been times I couldn’t walk because of my ankle hurting so badly, mostly it is in my hands and fingers , very painful at times but I can live w/it. I guess my main reason for wanting a reduced dose is so I can feel myself again, some sort of normality. I’m sure we all get tired of fighting this thing every day. At least it is working for us and I am very thankful for that.

    Dick, I am so confused, I thought the trials all ended when Zelboraf went on the market last Aug/Sept, at least that’s what they told me. ” FDA approval, now you have to pay for it” They set me up w/Biologics, a mail order pharmacy. They mail me a mos. worth and then bill the insurance and me. Once a yr I have to have a prescription sent in. I guess my poor husband will have to keep working for awhile so we can keep the ins. Makes me feel so guilty.

    Thanks everyone

    #55918
    marta010
    Participant

    I’m not sure if this was coincidence or a direct correlation, but my husband’s joint/muscle pain subsided greatly once he began taking Vitamin D supplements. He takes 4000 iu daily.

    #55919
    Catherine Poole
    Keymaster

    I like surveys, I hope you get a lot of responses. :D I’m not sure I understand Dick’s situation either with the Phase II trial still ongoing..Zelboraf.com should have co-pay assistance listed.

    #55920
    jmmm
    Participant

    My husband has been on Zelboraf for 10 months. NED officially on 8/7/12, but no growth shown on CT scans since 3/2012.

    Side effects….joint pain, rash, sin sensitivity, hair loss, tiredness, diarrhea

    He takes 6 pills a day…had to lower the dose because his liver couldn’t handle the full dose.

    Fortunately his insurance pays for the medicine. We did learn that the manufacturer offers co-pay assistance. The paperwork was easy and now they pay 80% of the copay, which really helps. Just go to Genetech’s website. I think they also have a program for uninsured patients to help with the cost.

    #55921
    meme
    Participant

    Hi! My 41 yrs old husband is on zelboraf full dosr since april this year. So far tumors on bones, liver, lungs and lymph nodes were reduced by over 30 per cent. This week he is having ct scans and we will know better where are we standing.

    We are under a trial ( zelboraf not yet approved by local “fda”, we are latam country) so its free for us. Do not know for how long..

    Side effects that remain are photosensitivity, body rash and hair loss. Joint pain dissappeared so far

    We are very positive, he id trying to avoid refined flour, sugar and red meats and incoporating lots of veg and fruits, green tea, curcum ( specie), brocoli and garlic.. Does no harm!!

    Hope it helps

    Best regards!

    Meme

    #55922
    LucyG
    Participant

    Hi,

    I was diagnosed with malignant melanoma in 1971 on my right shoulder. It was removed and I have been doing fine. Just this March, i had my annual breast exam. They thought they saw something under my right nipple, and did a biopsy. It was fine. A week later a growth started above my right breast. Five weeks later, I went back to my breast Doctor to see what was going on, since it continued to grow daily. The growth was removed, and they found another tumor on the right side of my lung and Took the third node and some lymph nodes out of me. Three weeks later, my husband took me back to my oncologist, because he said I wasn’t making any sense when I spoke. My Doctor did an MRI on my brain, and they determined I had another tumor on the front of my brain, so the 4th surgery was done on July 25, 2012. On August 19th, I started taking 4 chemo pills nightly, vemurafenib. I got a rash on my back and Claritan seemed to clear it up, I do have muscle aches and some red spots on my feet and wrist. I take small doses of Vicodin for these after affects. My moles and some warts have appeared on my back and side of my back, I see my dermatologist next month for him to remove. This is my first month on chemo pills, so I am hoping that my side affects improve, and the drug will work for me! If not, I will use UVA for another treatment. I am 58 years old, I have many years to enjoy my life! My best to all who are dealing with Melanoma or any cancer that can ruin your daily life.

    #55923
    cohanja
    Participant

    The mel from 1971 recurred in 2012? Geez. Can any other cancer do that, other than melanoma?

    #55924
    Catherine Poole
    Keymaster

    Yes, there are many cancers that can make a comeback after many years. However, we are never sure that a second primary is not involved.

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