Has anyone who has taken Valcyte developed cancer?

[Gingergrrl]

Hi @mtnbibliophile, I am very sorry about your misfortune, it must be really difficult for you. I hope you are getting the best of care and support from the medical personnel and from your loved ones.

@mtnbibliophile Me, too, and I am so sorry that you are going through this.

I am taking Valcyte myself and my physician has never mentioned this kind of risk to me. They would be obligated to mention it if it were a problem.

I actually did discuss this with my physician along with all the other risks on the Valcyte packaging which does state that it can cause cancer and several other very serious potential problems. I was initially scared but the information that I received was that these problems usually occur in someone with HIV who is already severely immuno-compromised vs. someone with CFS.

But to the larger issue of physicians having to warn you of potential side effects, I have rarely if ever had this occur, and in particular (and this gets off topic briefly) the ENT who gave me Levaquin samples in 2010 did not warn of the multiple FDA black box warnings that Levaquin could cause tendon rupture, peripheral neuropathy, mitochondrial damage, severe psychiatric effects, cardiac damage and the list is endless. I was told nothing and suffered a neurotoxic reaction that put me in the hospital and injured my right arm which I am still suffering with four years later. I am in no way comparing our CFS doctors to the ENT who gave me Levaquin (they are not even in the same league or planet!) but just using this as an example.

My CFS specialist completely missed the fact that my platelet counts were increasingly above normal for a year - in fact they reached a level more than twice the high end of the normal range.

I was just curious, does the Valcyte packaging say that it can cause an increase in platelets or a decrease in platelets? I just want to understand for my own knowledge. Having said all this, I am still taking Valcyte myself at a low dose (currently 1/8 tablet per day) and doing weekly safety labs. I went into it knowing all the risks (unlike when I took Levaquin) and made the choice that if Valcyte can potentially give me my life back, I am giving informed consent for whatever risks may be. But I agree that it can be a potentially dangerous drug and it is not for everyone. I turned it down twice before I said yes but I am overly cautious after my experience with Levaquin. But at that time I was a healthy person and lost a year and half of my life from Levaquin whereas now I am extremely sick and if Valcyte can give me any level of improvement, I will take it.

I hope this post helps someone down the line which is my intention for writing it.

 

[Kati]

@mtnbibliophile I know lousy care. It is probably worse because my dr knows I know, if you know what I mean.

Valcyte can also cause problems to the liver and kidneys amongst others. The one thing with pharmacotherapy is, which do you prefer, to treat and a have a chance at getting better, or not to treat?

i have been thankful to have been given this opportunity, as many don't.

 

[Daffodil]

i took valcyte for over 3 yrs a long time ago. i even took it despite high liver enzymes. i am also a little concerned now, as i am starting to show some weird symptoms..