Scalp conditions with Optune

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Scalp conditions with Optune

by BruceSt on Mon May 30, 2016 11:56 PM

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After about 8 good weeks on Optune my mothers scalp has exploded with what appears as burns from the arrays. I assume it's an allergic reaction reaction to the gel. We've taken two weeks off and then changed arrays daily for a week only to run out of healthy scalp. We've tried the typical 1% and precription strength 2.5% cortisone cream. A coupe of other over the counter creams. We've even tried aloe Vera and Manuka honey. About to the point of discontinuing. Prior to that I'm seeking feedback from anyone on here that may have had luck with a certain protocol? Thanks

RE: Scalp conditions with Optune

by devonsvoice on Thu Jun 02, 2016 05:59 PM

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Have you checked with her doctor for a prescription?

RE: Scalp conditions with Optune

by Lindau on Sat Jun 04, 2016 01:09 PM

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Hi Bruce,

  It has been a while since we chatted.  I am sorry to hear about your mom not responding well to the optune treatment. Did she use Optune along with TMZ?  How is your mom doing now?  My mom finished almost 5 rounds of Maintainance TMZ. Her Tumor is under control but she has slowed down alot and is usuing a walker now and her memory is not good. Her Doctor suggested we don not give her  any more chemo at this point.  She is too weak.  

Linda

RE: Scalp conditions with Optune

by plzlive on Sun Jun 12, 2016 05:25 AM

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My husband who has GBM tried and hated Optune. He tried once for less than a day and a month later he tried again, but he only lasted 3 days and when his hair grew a bit and the arrays needed to be changed he wouldn't let me put it back on. I know after just that short time he had burns and sores on his head. When you think about how large those batteries are and yet they only last up to 2 1/2 - 3 hrs, that's a lot of power and heat directly on the scalp. Just as much power comes from the power supply that you plug into the wall. As you know the little circular thing in each disc senses just how much heat is there and we were told if it got too hot it would beep. The only time it beeped for my husband was at the end, the third day and he had many small burns. My husband said he just couldn't handle it and when we saw the NO a couple of days later, he said that he was told by the Novocure Optune people that it increases the quality of patients' lives, but as a Dr he couldn't see it. He told my husband not to worry about stopping it. I worry about the burns/sores for your mom. She certainly doesn't want to chance infection which I would fear with so much scalp damage. It's only my opinion, but I do think they're most likely burns and if not, they're sores and both can cause infections. Only my opinion, I was an RN, but not in neuro and obviously not a Dr. Best of luck. It's so hard.

RE: Scalp conditions with Optune

by SDinSD on Sat Jun 25, 2016 06:21 PM

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Hello BruceSt,

I've been wearing Optune since Dec 2015. It was all gravy for the first several weeks and then an 'explosion' occurred similar to your description. I agree that the hydro-gel is what affects me the most despite weeks of successful use.

After many variations in care, we are managing okay. Most important for us is daily array changes. During a change, we leave the arrays off for an hour or more and treat sparingly with hydrocortisone cream 1% (due to general ill effects of long term use). We also use mupirocin cream 2% (bactroban). The hydrocortisone is used for red itchy areas and the mupirocin for bumps and open sores. I can go for ~10 days and then need to leave the arrays off for ~24 hours for scalp healing and then start the process again. When I initially take the arrays off, I sometime experience insane itching. I can generally resolve this with Head & Shoulders sampoo and thorough rince. The active ingredient is pyrithione zinc 1%. After sampoo, I then apply the hydrocortisone and mupirocin and let it work for an hour or more. Then wash again with head & shoulders. I then proceed with shaving with array placement, the whole time being mindful of sanitation (alcohol on shaver and finish with alcohol on my scalp (isopropyl 70%) before array placement. Hope this helps your mom.

One additional thought is the general usefulness of a paper we found on the internet titled:

Characterization and Management of Dermatologic Adverse Events With the NovoTTF-100A System, a Novel Anti-mitotic Electric Field Device for the Treatment of Recurrent Glioblastoma.

I think you will find it very interesting.

Oh, and one more thought. My wife trims off a large portion of each array to promote healing on non-covered areas and provide maximum air to my scalp.

Good luck,

Sean.

RE: Scalp conditions with Optune

by BruceSt on Wed Jun 29, 2016 01:46 AM

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On Jun 04, 2016 1:09 PM Lindau wrote:

Hi Bruce,

  It has been a while since we chatted.  I am sorry to hear about your mom not responding well to the optune treatment. Did she use Optune along with TMZ?  How is your mom doing now?  My mom finished almost 5 rounds of Maintainance TMZ. Her Tumor is under control but she has slowed down alot and is usuing a walker now and her memory is not good. Her Doctor suggested we don not give her  any more chemo at this point.  She is too weak.  

Linda

Hey Linda

I just saw your post from first of the month. I'm sorry your mom's not handling the TMZ. 

Has she tried any alternate supplements?

Moms about to start cycle 6. We just got back from Duke who we use as a Seco d set of eyes and her MRI remains clear (Thank God)

We are changing arrays daily on Optune and managing...

Is your mom using it?

Hang in there & stay in touch

Prayers for you and her,

Bruce

RE: Scalp conditions with Optune

by BruceSt on Wed Jun 29, 2016 01:47 AM

Quote | Reply

On Jun 04, 2016 1:09 PM Lindau wrote:

Hi Bruce,

  It has been a while since we chatted.  I am sorry to hear about your mom not responding well to the optune treatment. Did she use Optune along with TMZ?  How is your mom doing now?  My mom finished almost 5 rounds of Maintainance TMZ. Her Tumor is under control but she has slowed down alot and is usuing a walker now and her memory is not good. Her Doctor suggested we don not give her  any more chemo at this point.  She is too weak.  

Linda

Hey Linda

I just saw your post from first of the month. I'm sorry your mom's not handling the TMZ. 

Has she tried any alternate supplements?

Moms about to start cycle 6. We just got back from Duke who we use as a Seco d set of eyes and her MRI remains clear (Thank God)

We are changing arrays daily on Optune and managing...

Is your mom using it?

Hang in there & stay in touch

Prayers for you and her,

Bruce

RE: Scalp conditions with Optune

by BruceSt on Wed Jun 29, 2016 01:52 AM

Quote | Reply

On Jun 25, 2016 6:21 PM SDinSD wrote:

Hello BruceSt,

I've been wearing Optune since Dec 2015. It was all gravy for the first several weeks and then an 'explosion' occurred similar to your description. I agree that the hydro-gel is what affects me the most despite weeks of successful use.

After many variations in care, we are managing okay. Most important for us is daily array changes. During a change, we leave the arrays off for an hour or more and treat sparingly with hydrocortisone cream 1% (due to general ill effects of long term use). We also use mupirocin cream 2% (bactroban). The hydrocortisone is used for red itchy areas and the mupirocin for bumps and open sores. I can go for ~10 days and then need to leave the arrays off for ~24 hours for scalp healing and then start the process again. When I initially take the arrays off, I sometime experience insane itching. I can generally resolve this with Head & Shoulders sampoo and thorough rince. The active ingredient is pyrithione zinc 1%. After sampoo, I then apply the hydrocortisone and mupirocin and let it work for an hour or more. Then wash again with head & shoulders. I then proceed with shaving with array placement, the whole time being mindful of sanitation (alcohol on shaver and finish with alcohol on my scalp (isopropyl 70%) before array placement. Hope this helps your mom.

One additional thought is the general usefulness of a paper we found on the internet titled:

Characterization and Management of Dermatologic Adverse Events With the NovoTTF-100A System, a Novel Anti-mitotic Electric Field Device for the Treatment of Recurrent Glioblastoma.

I think you will find it very interesting.

Oh, and one more thought. My wife trims off a large portion of each array to promote healing on non-covered areas and provide maximum air to my scalp.

Good luck,

Sean.

Thanks for the great tips

Daily changes are working well for us right now

God bless & stay in touch

RE: Scalp conditions with Optune

by Lindau on Thu Oct 06, 2016 01:43 AM

Quote | Reply

On Jun 29, 2016 1:47 AM BruceSt wrote:

On Jun 04, 2016 1:09 PM Lindau wrote:

Hi Bruce,

  It has been a while since we chatted.  I am sorry to hear about your mom not responding well to the optune treatment. Did she use Optune along with TMZ?  How is your mom doing now?  My mom finished almost 5 rounds of Maintainance TMZ. Her Tumor is under control but she has slowed down alot and is usuing a walker now and her memory is not good. Her Doctor suggested we don not give her  any more chemo at this point.  She is too weak.  

Linda

Hey Linda

I just saw your post from first of the month. I'm sorry your mom's not handling the TMZ. 

Has she tried any alternate supplements?

Moms about to start cycle 6. We just got back from Duke who we use as a Seco d set of eyes and her MRI remains clear (Thank God)

We are changing arrays daily on Optune and managing...

Is your mom using it?

Hang in there & stay in touch

Prayers for you and her,

Bruce

Hi Bruce,

   I am sorry I did not respond sooner.  Somehow I did not get a notice that you responded and I just happend to look and find it.  

My mom is not using Optune.  Her last MRI in July showed no change.  So that was a blessing.  In many ways my mom is doing better.  She still has some other health Issues,  like a much needed knee surgery, and bladder issues. But her cancer seems to be under control for now.  It will be 14 months since her surgery and my mom is now 70 years old.  

If I may ask?  How is your moms quality of life.  She must be very strong.  She has been through a lot for her age and still seems to have alot a fight left in her.  My mom uses a walker and is very slow.  But she still has a good quality of life.  

Did you have to travel far to go to Duke?  

Sincerely,  

Linda 

RE: Scalp conditions with Optune

by BruceSt on Thu Oct 06, 2016 02:56 AM

Quote | Reply

On Oct 06, 2016 1:43 AM Lindau wrote:

On Jun 29, 2016 1:47 AM BruceSt wrote:

On Jun 04, 2016 1:09 PM Lindau wrote:

Hi Bruce,

  It has been a while since we chatted.  I am sorry to hear about your mom not responding well to the optune treatment. Did she use Optune along with TMZ?  How is your mom doing now?  My mom finished almost 5 rounds of Maintainance TMZ. Her Tumor is under control but she has slowed down alot and is usuing a walker now and her memory is not good. Her Doctor suggested we don not give her  any more chemo at this point.  She is too weak.  

Linda

Hey Linda

I just saw your post from first of the month. I'm sorry your mom's not handling the TMZ. 

Has she tried any alternate supplements?

Moms about to start cycle 6. We just got back from Duke who we use as a Seco d set of eyes and her MRI remains clear (Thank God)

We are changing arrays daily on Optune and managing...

Is your mom using it?

Hang in there & stay in touch

Prayers for you and her,

Bruce

Hi Bruce,

   I am sorry I did not respond sooner.  Somehow I did not get a notice that you responded and I just happend to look and find it.  

My mom is not using Optune.  Her last MRI in July showed no change.  So that was a blessing.  In many ways my mom is doing better.  She still has some other health Issues,  like a much needed knee surgery, and bladder issues. But her cancer seems to be under control for now.  It will be 14 months since her surgery and my mom is now 70 years old.  

If I may ask?  How is your moms quality of life.  She must be very strong.  She has been through a lot for her age and still seems to have alot a fight left in her.  My mom uses a walker and is very slow.  But she still has a good quality of life.  

Did you have to travel far to go to Duke?  

Sincerely,  

Linda 

Hey Linda 

Long time! 

Good to hear from you although I'm sorry your mom's slowing down. My mother uses a walker some but she's got a lot of left side weakness that was caused by the stroke which was caused by the GBM. 

She is still doing optune and we seem to have found a routine there. She currently is in session 9 of maintenance temodar. Just got back from another great visit/MRI at Duke at the end of Sept  (we go every 8 weeks). Duke is 4.5 hours from us. 

Mom quality of life is as good as can be from a wheelchair. Her and dad pretty much live on their own with some assistance. 10/26 with mark 1 year so, we're thankful to be where we are.

Please stay in touch

Bruce 

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