Hair problems with Votrient

vagabond
vagabond Member Posts: 5
in Kidney Cancer #1

I was diagnosed with kidney cancer in 2013 and after removing a 7 pound tumor and my kidney and spleen the doctors were sure they got it all and no follow up treatment was done. Three years later, almost to the date. I found out it was back in my lung and bones. After many test and a few months I was put on 800mg of Votrient a day and it was horrible, could barely drag myself out of bed most days and tumor sites, oddly the bone ones hurt like heck. My bp went through the roof and I am now on bp meds, after several spells including a rash they had me stay off of it a week and do some more scans, according to the scans it has eliminated a lot of the small nodes and seems to be working at least on the lung. While I was off of it my shoulder which has a tumor on my collar bone hurt something awful but the one on my rib did not hurt, now that I am back on it my rib hurts so bad it blocks out the shoulder. My oncologist says they can "zap" whatever hurts though I don't think its that simple. when I started back I am only taking 400mg which means most days I am pretty much normal just a little extra tiered and lots of rib pain. My biggest problem right now (which I know sounds vain) is my hair is not only turning white from the Votrient is is thinning which makes me look like I have giant bald spots. The white roots will not hold die and the rest of my hair is a light to med blonde, I do not have a hat head and I really don't look good with short hair. Any suggestions, I had thought about trying to dye all of my hair white so it wouldnt be so obvious but I am worried I will look strange with long white hair.

Anyone going through this or have any suggestions, I know it seems like a stupid thing to worry about but honestly that is one of the ways I cope is by focusing on things I can maybe control instead of looking at the big horrible picture.

 

Thanks in advance for any help,

Vicky

Comments

  • Abunai
    Abunai Member Posts: 173 Member
    edited March 2017 #2
    Well....

    I was going to suggest you shave your head and grow a goatee, until I saw "Vicky".

    I'm off of Votrient now because it was ineffective for me. However, in the three months that I used it, it turned my beard and eyebrows white.

    Personally, I kind of like long white hair on younger women. I would see how it looks completely white. If you don't like it, maybe a wig or a bandana/scarf? I don't know what you are comfortable with, style-wise.

    You should add a picture to your account. I'm sure there are some people with fashion sense here that could tell you what would look good.

    Good luck!

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited March 2017 #3
    One change down

    more t o follow. Votrient is mean stuff. For a long time we tolerated the thinning white hair, nausea, fatigue, weight loss and more  just by trying to starve the tumors of capillization. We are learning that lower doses and decreased frequency can be effective without the side effects. I became so white I looked like I was growing invisible monofilament fishing line. Most of my color is back as in my current photo. I now take a drug in the same class as votrient but at reduced dosage. The best part is that I tolerate the sun better. And all I want is to be outside.

  • angec
    angec Member Posts: 924 Member
    edited March 2017 #4
    Vicky, how did you tolerate

    Vicky, how did you tolerate that high dose?  Fox is correct. Low doses are working too. My mom has been on 200 mgs for five years now.  In the beginning she had lots of side affects but she seems to either be use to it now or the side affects have gone.  She still gets  pains in her stomach though. The white hair is a trade mark of the drug.  Not sure if dye will hold, as it doesn't for mom.  She is 84 now so she mostly doesn't care.  You can try though. Although, see if you can get organic dye, the less toxins added to the body the better.  Hugs!

     

    Fox, what drug are you on now?

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited March 2017 #5
    Angec,

    only caboand zometa.

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