Side effect of Temodar- Shingles

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Side effect of Temodar- Shingles

by KDvull13 on Mon Jun 11, 2018 06:47 AM

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Hi all, my mom (now 66 yrs old) was diagnosed with grade 4 glioblastoma on May 5th 2017, she has had 3 surgeries, 6 weeks of radiation and chemo, and she just started her second round of temodar, and after her first 5 days, she got shingles as a side effect. Heartbreaking. Has anyone out there experienced this, or their loved one? Were they able to finish the treatment? Any advice? I appreciate it Thanks!

RE: Side effect of Temodar- Shingles

by Lesliegbm on Mon Jun 11, 2018 07:23 PM

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I am

RE: Side effect of Temodar- Shingles

by KDvull13 on Tue Jun 12, 2018 05:33 AM

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On Jun 11, 2018 7:23 PM Lesliegbm wrote:

I am
I’m so sorry to hear that, you must be so miserable and discouraged :( from what I’ve read it’s a more rare side effect. Do you mind if I ask a couple questions? If you do, you don’t have to reply I understand. Is this your second round of temodar? My mom is on the 5 days on, 3 weeks off schedule, and it’s her second round.. she got shingles on Wednesday so it’s almost been a week I guess, and it was right after her first week. Do you feel like it’s a set back? Probably a dumb question.. I guess I mean, do you feel like it will change the effectiveness of the chemo? I’m worried this is just the beginning of a miserable time for her. Anyway thank you for replying, and I’m sorry you’re going through this. I hope you find relief really soon

RE: Side effect of Temodar- Shingles

by Lesliegbm on Tue Jun 12, 2018 05:32 PM

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On Jun 12, 2018 5:33 AM KDvull13 wrote:

On Jun 11, 2018 7:23 PM Lesliegbm wrote:

I am
I’m so sorry to hear that, you must be so miserable and discouraged :( from what I’ve read it’s a more rare side effect. Do you mind if I ask a couple questions? If you do, you don’t have to reply I understand. Is this your second round of temodar? My mom is on the 5 days on, 3 weeks off schedule, and it’s her second round.. she got shingles on Wednesday so it’s almost been a week I guess, and it was right after her first week. Do you feel like it’s a set back? Probably a dumb question.. I guess I mean, do you feel like it will change the effectiveness of the chemo? I’m worried this is just the beginning of a miserable time for her. Anyway thank you for replying, and I’m sorry you’re going through this. I hope you find relief really soon
be encouraged!It didn’t change the chemo effect I-am 5yr long term survivor no reoccurrence But it was at the time a bummer I had completed radiation but was on the Maintenance protocol when I got it. my posts have been difficult on my iPhone so I am was not the intended reply to you. I’ve been past this set back. For some time after 2yrs of chemo I am now just having MRI s every3 mon. would love to be able to share my whole story I have 2 daughters and my heart breaks for how tuff this is for you all God Bless, Leslie

RE: Side effect of Temodar- Shingles

by Mack1994 on Sun Jun 17, 2018 07:12 PM

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On Jun 11, 2018 6:47 AM KDvull13 wrote:

Hi all, my mom (now 66 yrs old) was diagnosed with grade 4 glioblastoma on May 5th 2017, she has had 3 surgeries, 6 weeks of radiation and chemo, and she just started her second round of temodar, and after her first 5 days, she got shingles as a side effect. Heartbreaking. Has anyone out there experienced this, or their loved one? Were they able to finish the treatment? Any advice? I appreciate it Thanks!

I empathize, I finished 6 cycles of PCV first week of June, subsequently I developed shingles, I had finshed my chemo so I can't answer as to continuing the temodar.

I was admitted to the hospital and placed in isolation, as shingles is highly contagious, Iwas there for eight days and received acyclovir 800mg IV every 8 hours, could not be released from hospital as I had to receive at a minimum of at least seven days of the acyclovir and the lesions had to crust over before Icould be released and considered non contagious.

It was the most painful experience I've ever had, a searing burning pain where the lesions were on my left inner thigh, above, behind and below my knee, I could not stand on my leg at all, Iwas also prescribed gabapentin 1000mg three times a day and after three days the pain subsided enough that I could stand and get myself to the bathroom, to manage the pain until the gabapentin kicked in I was receving oxycodne every 4 hours as needed, and for the first three days beleive me I needed it.

I was also on IV normal saline for the entire time I was hosptalized, as acyclovir can damage the kidneys, I was urinating so much I requested a texas catheter.

Iwas discharged after eight days feeling like I had the worst case of the flu I ever had, however I am also dealing with the accumulative effects of the 6 cycles of PCV, I am weak, fatigued, and have no  strength or energy.

I would imagine your mother is hospitilized as it is required by public health law, and this is the best place she can be now for treatment and they can closely monitor her kidney function as well as her liver function.

I neglected to mention that I was supossed to receive one last infusion of vincristne, within the time frame I was hospitilized and was told I would not receive that infusion.

I wish you and your mother the best going forward.

RE: Side effect of Temodar- Shingles

by Lesliegbm on Sun Jun 17, 2018 10:44 PM

Quote | Reply

On Jun 12, 2018 5:33 AM KDvull13 wrote:

On Jun 11, 2018 7:23 PM Lesliegbm wrote:

I am
I’m so sorry to hear that, you must be so miserable and discouraged :( from what I’ve read it’s a more rare side effect. Do you mind if I ask a couple questions? If you do, you don’t have to reply I understand. Is this your second round of temodar? My mom is on the 5 days on, 3 weeks off schedule, and it’s her second round.. she got shingles on Wednesday so it’s almost been a week I guess, and it was right after her first week. Do you feel like it’s a set back? Probably a dumb question.. I guess I mean, do you feel like it will change the effectiveness of the chemo? I’m worried this is just the beginning of a miserable time for her. Anyway thank you for replying, and I’m sorry you’re going through this. I hope you find relief really soon
hi KDvull- Just checking on you and your Mom hope and pray that her shingles are a mild case and she is doing well. If I can answer any otherquestions or encourage you both I am very willing and able. Your reply to my errant Post was so very kind I’m sorry that I was meant to be an encouraging post that I was past that terrible time and WAS able to continue Temodarand have had no reoccurrence PTL. may your Moms story be similar Leslie Gbm dxJan16,2014

RE: Side effect of Temodar- Shingles

by Lesliegbm on Sun Jun 17, 2018 11:50 PM

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On Jun 17, 2018 7:12 PM Mack1994 wrote:

On Jun 11, 2018 6:47 AM KDvull13 wrote:

Hi all, my mom (now 66 yrs old) was diagnosed with grade 4 glioblastoma on May 5th 2017, she has had 3 surgeries, 6 weeks of radiation and chemo, and she just started her second round of temodar, and after her first 5 days, she got shingles as a side effect. Heartbreaking. Has anyone out there experienced this, or their loved one? Were they able to finish the treatment? Any advice? I appreciate it Thanks!

I empathize, I finished 6 cycles of PCV first week of June, subsequently I developed shingles, I had finshed my chemo so I can't answer as to continuing the temodar.

I was admitted to the hospital and placed in isolation, as shingles is highly contagious, Iwas there for eight days and received acyclovir 800mg IV every 8 hours, could not be released from hospital as I had to receive at a minimum of at least seven days of the acyclovir and the lesions had to crust over before Icould be released and considered non contagious.

It was the most painful experience I've ever had, a searing burning pain where the lesions were on my left inner thigh, above, behind and below my knee, I could not stand on my leg at all, Iwas also prescribed gabapentin 1000mg three times a day and after three days the pain subsided enough that I could stand and get myself to the bathroom, to manage the pain until the gabapentin kicked in I was receving oxycodne every 4 hours as needed, and for the first three days beleive me I needed it.

I was also on IV normal saline for the entire time I was hosptalized, as acyclovir can damage the kidneys, I was urinating so much I requested a texas catheter.

Iwas discharged after eight days feeling like I had the worst case of the flu I ever had, however I am also dealing with the accumulative effects of the 6 cycles of PCV, I am weak, fatigued, and have no  strength or energy.

I would imagine your mother is hospitilized as it is required by public health law, and this is the best place she can be now for treatment and they can closely monitor her kidney function as well as her liver function.

I neglected to mention that I was supossed to receive one last infusion of vincristne, within the time frame I was hospitilized and was told I would not receive that infusion.

I wish you and your mother the best going forward.

mack1994 oh my- I am not familiar w the PCV treatment for your form of brain cancer but it sounds like you had a severe shingles case. with My oncologist was trying to clear my body of a cold before I started on my next round of Temodar. his large dose of antibiotics backfired giving me a terrible case of Thrush(understand why babies cry when they get this) then shingles broke out on my nose heading toward my eye CranialNerve#5 I was told. I was not hospitalized but fought it out at home with close supervision by an Opthamologist and prescribed pain meds Valtrex and cooling eye drops. it was not a happy time. thought it just might send me to heavens gate. Thankfully my cornea &eyesight were spared. i’m Back to normal- if Anyone wGBM can be normal- I havean itching nose where the nerves were damaged and lots of empathy For anyone with shingles. Antibiotics should be prescribed with wisdom for anyone compromised by chemo. I hope you are fully recovered and back in the fight against cancer not shingles. God Bless, Leslie GBM dx1/16/2014

RE: Side effect of Temodar- Shingles

by KDvull13 on Mon Jun 25, 2018 06:28 AM

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Leslie- sorry it took me so long to reply. I’m happy to hear you’re doing well! That’s so great. I know it’s a rough road for patients and their families and my heart breaks for people who have to face this reality. My moms shingles are healing well, after she got the shingles, she got the stomach flu, so I have been helping her as much as I can. She’s just miserable. Her oncologist put her chemo on hold until the shingles heal. We’ll reevaluate in a couple weeks. Her tumors are in her temporal lobe area, so she’s really having a hard time communicating and comprehending anything really. So it makes it even harder. It has been almost 14 months since her diagnoses, 3 surgeries (one because of a major staff infection) radiation and chemo. And I think she’s about had it. But all we can do is take one day at a time and enjoy the time we have together.
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