Hi All,
My brother has been taking Valcyte for 22 months. Today after a great MRI result his oncologist has suggested stopping Valcyte.
What are your thoughts?
Best wishes, Lisa
I can't see that there's a lot of evidence available to guide this kind of decision. This item is informative: http://www.nejm.org/doi/full/10.1056/nejmc1302145#t=article "Survival in Patients with Glioblastoma Receiving Valganciclovir" The overall impression is that longer treatment is better. If there's no side effects, my inclination in your shoes would be to keep going. Does a "great MRI" mean no visible disease, or no tumor growth? Either way, I'd want to continue, but especially so if the Valcyte might be holding tumor in check.
I have been on Valcyte for 18 months and at this point in time plan to continue Valcyte indefinitely barring any adverse side effects (i.e., detrimental decrease in lymphocyte count). I was diagnosed GBM4 in 11/2014- and MRIs have been stable showing tiny improvements. I asked a prominent neurosurgeon who is very knowledgeable with respect to Valcyte if I should discontinue Valcyte and he opined "there's no good data, but if it were me I'd never stop."
If you could find out, I would also be interested in the reasoning your brother's oncologist gave to stop Valcyte.
Hi Mike, can I ask you what dose of valcyte have you been taking? My husband is taking 450 mg twice a day but that doesn't seem to be working for him because he had a couple of recurrences on it. Was wondering if the ones who had positive results with it were using more?
I was diagnosed GBM4 in 11/2014- to date my MRIs have been stable. I started Valcyte after completion of 30 sessions of radiotherapy/daily temodar and just before the 5/23 adjuvant Temodar cycles started. I did a three week loading dose of 900mg twice daily for three weeks, then reduced to a maintenance dose of 450mg twice daily- which is the dose I currently take. It is also best to take Valcyte with a fatty meal as it increases its bioavailability. Along with a fairly extensive cocktail, I have also continued to take 5/28 temodar and have completed 23 cycles.
I think that CMV (variant) viruses can trigger in some patients the GBM-initiating cells to form tumor - without being later-on a driving force as such. This is a DNA virus that remains in the body. So I believe from a biological viewpoint that in those patients who have tumor control under ganciclovir, one should continue.
Hi. Just informing that Valcyte has not helped my husband with GBM. We stopped it yesterday. He has been on it since January and the tumor grew and grew even more rapidly. We think other treatment helped him now but not Valcyte. Just for the info. All the best to all who are helped with Valcyte.
Switching from Valcyte to Letermovir though would probably need further study. Valcyte is sort of chemo that is targeted at viral cells, but also produces collateral damage and does damage to DNA in other cells too. Letermovir is being touted as having far fewer side effects, but its possible that some of the side effects of Valcyte are actually beneficial.
If it was simply a matter of suppressing CMV then it seems like doing the standard 3-4 months of Valcyte would succeed and that the GBM studies would not be indicating that continuous treatment with Valcyte is beneficial.
I can't see that there's a lot of evidence available to guide this kind of decision. This item is informative:
ReplyDeletehttp://www.nejm.org/doi/full/10.1056/nejmc1302145#t=article
"Survival in Patients with Glioblastoma Receiving Valganciclovir"
The overall impression is that longer treatment is better. If there's no side effects, my inclination in your shoes would be to keep going. Does a "great MRI" mean no visible disease, or no tumor growth? Either way, I'd want to continue, but especially so if the Valcyte might be holding tumor in check.
I don't see any reason to end Valcyte use at this point. Would be very interested to here your oncologist's reasoning.
ReplyDeleteI wasn't at the consultation so I'm not sure why he suggested to stop. My thinking was also to keep on it as no side effects. Thanks for replying.
ReplyDeleteHi Lisa,
ReplyDeleteI have been on Valcyte for 18 months and at this point in time plan to continue Valcyte indefinitely barring any adverse side effects (i.e., detrimental decrease in lymphocyte count). I was diagnosed GBM4 in 11/2014- and MRIs have been stable showing tiny improvements. I asked a prominent neurosurgeon who is very knowledgeable with respect to Valcyte if I should discontinue Valcyte and he opined "there's no good data, but if it were me I'd never stop."
If you could find out, I would also be interested in the reasoning your brother's oncologist gave to stop Valcyte.
Regards,
Mike B.
Hi Mike, can I ask you what dose of valcyte have you been taking? My husband is taking 450 mg twice a day but that doesn't seem to be working for him because he had a couple of recurrences on it. Was wondering if the ones who had positive results with it were using more?
DeleteHi Noha,
DeleteI was diagnosed GBM4 in 11/2014- to date my MRIs have been stable. I started Valcyte after completion of 30 sessions of radiotherapy/daily temodar and just before the 5/23 adjuvant Temodar cycles started. I did a three week loading dose of 900mg twice daily for three weeks, then reduced to a maintenance dose of 450mg twice daily- which is the dose I currently take. It is also best to take Valcyte with a fatty meal as it increases its bioavailability. Along with a fairly extensive cocktail, I have also continued to take 5/28 temodar and have completed 23 cycles.
Best to you and your husband,
Mike B.
I think that CMV (variant) viruses can trigger in some patients the GBM-initiating cells to form tumor - without being later-on a driving force as such. This is a DNA virus that remains in the body. So I believe from a biological viewpoint that in those patients who have tumor control under ganciclovir, one should continue.
ReplyDeleteHi Lisa, can I ask you how much valcyte is your husband taking? Thanks and best of luck
ReplyDeleteHi. Just informing that Valcyte has not helped my husband with GBM. We stopped it yesterday.
ReplyDeleteHe has been on it since January and the tumor grew and grew even more rapidly. We think other treatment helped him now but not Valcyte. Just for the info. All the best to all who are helped with Valcyte.
New antiviral drug cuts cytomegalovirus infection, improves survival in patients undergoing donor stem cell transplant
ReplyDeletehttps://www.sciencedaily.com/releases/2017/02/170224121742.htm
It may be relevant in the near future
Switching from Valcyte to Letermovir though would probably need further study. Valcyte is sort of chemo that is targeted at viral cells, but also produces collateral damage and does damage to DNA in other cells too. Letermovir is being touted as having far fewer side effects, but its possible that some of the side effects of Valcyte are actually beneficial.
ReplyDeleteIf it was simply a matter of suppressing CMV then it seems like doing the standard 3-4 months of Valcyte would succeed and that the GBM studies would not be indicating that continuous treatment with Valcyte is beneficial.