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Has anyone who has taken Valcyte developed cancer?

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1
I took Valcyte back in 2008 for around two weeks. I don't recall the exact dosage, but I think it was 900mg a day. Whatever the "Montoya Protocol" was at the time. I kind of regret doing it, because I can't say that I felt much of a difference after taking it. Ever since taking the medicine I've been afraid of developing cancer. There isn't a lot of specific information out there about the relationship between taking Valcyte and developing cancer, just the "valcyte may cause cancer" that all of the drug websites have. So, does anyone know of someone who took Valcyte and developed cancer afterwards? I'm actually experiencing a lot of bone pain right now and I'm concerned that it might be a sign of bone cancer or something similar. I'm probably overreacting, but Valcyte has made me worry about this sort of thing.
 

Hope123

Senior Member
Messages
1,266
If I remember right, the cancer risk related to Valcyte was from studies in mice who took higher doses and the cancer developed in tissues that did not have an analagous component in humans.

Also, just to clarify, there are studies out there on people who took Valcyte and have a history of cancer/ organ transplant, etc. but this is because their cancer/ transplant, etc. treatment put them at higher risk for herpes virus infections and some ended up on Valcyte to take care of the infections. That is, they had cancer before the valcyte and not after.

There are risks to any drugs but I doubt that two weeks would put you at higher risk for cancer. However, there are some studies/ reports in the past that suggest just having ME/CFS might put you at a higher risk for lymphoma than the general population so even if you encounter people with ME/CFS who have cancer that took Valcyte, it might not be the valctye.
 

aquariusgirl

Senior Member
Messages
1,732
I heard from a woman, who said she used to work for Roche Pharmaceuticals, that there was a correlation between AIDS patients who took Valcyte & bone & blood cancers. Purely anecdotal so make of it what you will. So you may want to check with HIV/AIDs groups. (This woman has passed on sadly.....so there is no more information to be had there.)

MoJoey was saying something about how Valcyte shuts down a DNA/RNA pathway....so maybe there's a clue there?

FWIW.
 
Messages
16
Prior to my taking Valcyte for 5 months, I did some research on Valcyte in humans and this is what I found. There is a study which specifically looked for cancer in 9-14 year olds who were given ganciclovir as neonates. The trial can be found here:

http://clinicaltrials.gov/ct2/show/NCT00031421?term=NCT00031421&rank=1


A second study showed that the use of Valcyte reduced the risk of cancer in kidney transplant patients:


http://www.medicalnewstoday.com/releases/8455.php#opinions

Good luck,

chili
 

SOC

Senior Member
Messages
7,849
I, too, doubt that 2 weeks on Valcyte has put you at significantly higher risk of cancer. However, if you are concerned that your bone pain may be bone cancer, I suggest you get tested as soon as possible. It's better than worrying. :D
 

heapsreal

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10,079
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Maybe having these viruses is making one prone to cancer not the antivirals, av's maybe a coincidence. Dr Peterson has found higher rates of cancer in the lake tahoe outbreak of cfs, that was pre valcyte for cfs. Dammed if you do and dammed if you dont???

good luck.
 

charityfundraiser

Senior Member
Messages
140
Location
SF Bay Area
If I remember right, the cancer risk related to Valcyte was from studies in mice who took higher doses and the cancer developed in tissues that did not have an analagous component in humans.

I remember Dr. Montoya saying something to that effect and similar rumors on message boards. The actual drug information sheet says both of those statements are false. Yet another thing I have realized only later harmful about his treatment and interaction with patients. Also receiving the same dosage as patients twice my weight (the average American).

http://www.roche-australia.com/fmfiles/re7229005/downloads/anti-virals/valcyte-pi.pdf

"Toxicity in mice, dogs and rats was primarily characterised by testicular atrophy. Male infertility occurred at doses of 2 mg/kg/day and above which was consistent with the infertility and testicular atrophy seen in toxicity studies with doses between 2 and 10 mg/kg/day. In females, a more complex range of effects were induced which were characterised by embryo-foetal abnormalities and embryo-foetal losses in mice and rabbits and in multi-dose studies, by toxic and eventually carcinogenic changes to the reproductive system in mice.

Ganciclovir was carcinogenic in the mouse after oral doses of 20 mg/kg/day for 18 months and 1000 mg/kg/day for 15 months. All ganciclovir-induced tumours were of haematopoietic epithelial or vascular origin. Epithelial tumours involved a wide variety of tissues, including the female reproductive organs, pancreas, gastrointestinal tract and skin, as well as rodent specific glands (perputial, clitoral and Harderian). Vascular tumours were observed in females, mainly in the reproductive organs, but also in the mesenteric lymph nodes and liver. No carcinogenic effects occurred at 1 mg/kg/day. Based on data on plasma drug concentrations, exposure of humans to ganciclovir would be similar to or greater than the exposure of mice in the above study at 1000 mg/kg/day. This potential is likely to be markedly greater in children, as cell division occurs more rapidly in children."
 

satoshikasumi

Senior Member
Messages
113
Just pointing out that EBV infection is pretty strongly associated with certain cancers, i.e. lymphomas. There may be more evidence that herpesviruses cause cancer than valcyte causing cancer. However, it has not been proved convincingly that taking antivirals reduces the risk of cancer. Valcyte clearly has some toxic effects other than cancer, but many patients do not have adverse effects.
 

charityfundraiser

Senior Member
Messages
140
Location
SF Bay Area
I remember Dr. Montoya mentioned that one patient dropped out of the clinical trial to get treated for cancer but that it was unrelated to the trial, but did not say how they determined it was unrelated. Does anyone know more about this?
 
Messages
41
abstractblue, I hope your bone pain was due to something less dire than cancer, but in response to your original question, I took Valcyte for 6 months and later developed cancer. Four years later my longstanding problem with precancerous cells in my cervix worsened to the point where I needed a complete hysterectomy, and three years after that I developed a rare form of leukemia.
However, I strongly suspect the cancers are a result of the CFS and other factors rather than the Valcyte. I doubt that two weeks of Valcyte would put you at risk (and likewise, two weeks was not long enough for the Valcyte to have any positive effects either).
 
Messages
41
IreneF, not all cancers can be cured. My rare form of leukemia, which involves formation of scar tissue in the bone marrow, is one that cannot, and I expect it to be terminal within a few years. I took Valcyte for almost 6 months and it made me feel awful the whole time, plus my EBV and HHV-6 levels skyrocketed afterwards. (My doctor had no explanation for that.) I've never returned to the level of health I had before the CFS and bad as it was, I sure wish I felt that good today.
I suggest that people with a history of cancer themselves or in their close family not take Valcyte. If you take Valcyte and still feel worse after a couple months, I suggest that that is not just die-off reaction and you should quit taking the Valcyte. I sure wish I had stopped sooner.
 

Gingergrrl

Senior Member
Messages
16,171
@mtnbibliophile I am so sorry to hear of your experience and was wondering what dose of Valcyte you took over the course of the six months. No worries if you do not remember.

I am taking an extremely low dose of Valcyte for the last 2.5 weeks and having a lot of benefits so far. I am suspecting that all the negative reactions are from the much higher doses. In my case, I have to start very low with meds and build up slowly as my only chance of tolerating them.
 

heapsreal

iherb 10% discount code OPA989,
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Cfsers are at a greater risk of cancers due to low nk function. Natural killer cells job is to kill cancer infected cells and viral infected cells. Plus many herpes viruses are implicated in cancers.

So dammed if you do or dammed if you dont.
 
Messages
41
Thanks, Gingergrrl. Darnit, I'm usually pretty careful about writing down what I'm taking and keeping it, but for some reason I didn't write down the dosage for the Valcyte. It was not a particularly low dose; it was whatever the standard Montoya protocol was at the time.
 

Kati

Patient in training
Messages
5,497
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.

Up to the time I got sick I was a chemo nurse first in bone marrow transplant and then outpatient chemo unit.

You have mentioned you had cervical cancer. The risk factors usually associated with this particular type of cancer is HPv (human papilloma virus). I am not sure if you received chemo or radiation for this, but both would be a risk factor to get a second malignancy.

Out of my years practicing I have never heard anyone getting a cancer due to taking antivirals such as Valcyte. 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 wish you the very best.
 
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Messages
41
@Kati, like most people with CFS/ME I get lousy care from my doctors. My oncologist now is very good, but there's really not much that can be done for this type of leukemia. 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. The first doctor to notice this was a cardiologist (who I had to stop seeing because he didn't understand CFS/ME) but when he looked at my platelet count he visible paled and immediately got on the phone to an oncologist to make an appointment for me. Two other medical personnel had also missed the increasing platelet count during the year before diagnosis, including my primary medical provider who saw my blood test results repeatedly.

There is no question that Valcyte can cause bone marrow failure. Check http://www.ncbi.nlm.nih.gov/pubmed/19545700 for one of several medical studies. This is not anecdotal evidence.

I have almost never had a doctor warn me of possible dangerous side effects of a medication.

The cancerous cervical cells were a result, by the way, of the fact that my mother took Diethylstilbestrol (DES) took when she was pregnant with me - a drug which was prescribed even though it had already been shown to be ineffective. I first developed abnormal cervical cells when I was in my teens.