Face mask

forme

Hi all,
I am hoping some of you will have great advice. My mom in law is thinking of having cyberknife tx with the face mask for brain mets. Since I have not had to experience the face mask , as of yet, I thought of many of you and hope you can offer advice. This would be a treatment for pallitive reasons only. She is 84 and has stage 4 melanoma. Aside from the cancer, her overall health is on the poor side of average. Do you think an elderly lady who is still a big smoker... could handle the face mask. She turns to me for medical advice, so now I am turning to all of you. Any thoughts would be helpful. She must make up her mind before the 8th of Nov. She will be treated at Moffitt Cancer Center in Tampa.
peaceful healing
Lisha

Pam M

I Would Think She Could Do the Mask
I think that the vast majority of us do not like the mask, but can put up with it. Even the folks who need a little chemical assistance to be able to handle it, most don't need it for the duration. The meds don't zonk you out, they just take the edge off. For me, the first was the worst, and it got easier as I went (until later, but that was only because of mucous issues that I think only mouth/throat patients deal with - even then, it was doable).

It helped me to have music of my choice playing, and to do a sort of self-soothing ("this machine is not zapping me, it is zapping invader cancer cells, and cells that may be affected - the mask is not for pinning me down against my will; it's to help me hold still so the machine can do its job better - I'm fine - if I freak out or choke, all I have to do is wave my hands, and the techs will be in right away to help me - the mask is tight, but that helps it to help me", etc.)

If you could find out what the room temp is like beforehand, that would be great. That way, your mom could dress for having the mask made the way she'd be most comfortable during treatments. I got to keep my clothes on, but since I didn't wear a collared shirt for the making of the mask, I didn't get them during treatment. Probably for the best; glad I didn't wear a light shirt for the fitting. I wore snap front thermal shirts over tank tops. I got to keep my clothes on (including bra), but shirts open.

I think almost all of us are hinky at first, but I would think unless she's really claustrophobic, she'll be fine. Good luck.

Hondo

Face mask at 84
I hope I live to just be close to 80. It is hard to say how she will do, does she have any problems with close in spaces. When I was taking treatment a few years ago there was a man there 95 taking treatment, he drove himself there and back home everyday.

These Elderly people are a lot stronger then we sometimes believe

forme

Hondo said:

Face mask at 84
I hope I live to just be close to 80. It is hard to say how she will do, does she have any problems with close in spaces. When I was taking treatment a few years ago there was a man there 95 taking treatment, he drove himself there and back home everyday.

These Elderly people are a lot stronger then we sometimes believe

Thanks
Hi Hondo and Pam,
Thanks for your thoughts on the face mask. My mom in law told me she is really claustrophobic, so I will suggest to her about some meds to calm her. Also the suggestion about clothing was a good one. I have been trying to think of everything , that was one that I didn't come up with. I knew you guys would have some great advice to share.
Peaceful healing
Lisha

Skiffin16

XANAX for Anxiety
Lisha,

XANAX worked for me during the inital few days, after that I was OK. Comfy loose clothes, and her favorite CD also....

Moffit is an awesome place, I go/went to Watson Clinic in Lakeland which is affiliated with Moffit.

Lakeland is about 45 miles or so from Moffit in Tampa...

Try to get her off of the smokes, I know it's got to be rough, but....

Best,
John

forme

Skiffin16 said:

XANAX for Anxiety
Lisha,

XANAX worked for me during the inital few days, after that I was OK. Comfy loose clothes, and her favorite CD also....

Moffit is an awesome place, I go/went to Watson Clinic in Lakeland which is affiliated with Moffit.

Lakeland is about 45 miles or so from Moffit in Tampa...

Try to get her off of the smokes, I know it's got to be rough, but....

Best,
John

Thanks
Hi John,
I so agree about the smokes. But that is the one thing she will not let go of. Sad...
I had a long chat with her today, she meets with the RO on the 8th. I think her plan is to not do the cyberknife and just treat for pain and such. We are going to try and move her out to Calif for her final days. Of course she may change her mind about the tx. This is a grim situation.
Lisha

Pam M

forme said:

Thanks
Hi John,
I so agree about the smokes. But that is the one thing she will not let go of. Sad...
I had a long chat with her today, she meets with the RO on the 8th. I think her plan is to not do the cyberknife and just treat for pain and such. We are going to try and move her out to Calif for her final days. Of course she may change her mind about the tx. This is a grim situation.
Lisha

Sorry
Man, sorry to hear, Lisha - hope she changes her mind about rads. Is she from Cali?

forme

Pam M said:

Sorry
Man, sorry to hear, Lisha - hope she changes her mind about rads. Is she from Cali?

Difficult
Hi Pam,
I am finding it hard to offer her advice. She really has very little time left. She has said that she wants to be with all of us, most of her fam is in Calif. That was where she grew up and also raised her family. Only been in FL for 7 years.
My understanding is that the cyberknife will only lessen symptoms for a short time, maybe a few weeks. So she is thinking it is not worth the risk of side effects. The Docs have said that she no longer will be able to do the trial drug. They have very little left to offer besides hospice. This is why we are thinking of bringing her out while it is still possible.
Sad any way you look at it..

Pam M

forme said:

Difficult
Hi Pam,
I am finding it hard to offer her advice. She really has very little time left. She has said that she wants to be with all of us, most of her fam is in Calif. That was where she grew up and also raised her family. Only been in FL for 7 years.
My understanding is that the cyberknife will only lessen symptoms for a short time, maybe a few weeks. So she is thinking it is not worth the risk of side effects. The Docs have said that she no longer will be able to do the trial drug. They have very little left to offer besides hospice. This is why we are thinking of bringing her out while it is still possible.
Sad any way you look at it..

Difficult, Indeed
Very hard no matter which way you look at it. I'm sorry for your family. Sad to think that radiation would only add a few weeks to her survival. We have some folks here doing well on only radiation treatment - does she have areas that are affected, but wouldn't be radiated? Do you currently live in Cali? Hoping for strength and clarity for you all.

forme

Pam M said:

Difficult, Indeed
Very hard no matter which way you look at it. I'm sorry for your family. Sad to think that radiation would only add a few weeks to her survival. We have some folks here doing well on only radiation treatment - does she have areas that are affected, but wouldn't be radiated? Do you currently live in Cali? Hoping for strength and clarity for you all.

Very difficult
Hi Pam,
We have a plan now. She will move to Ca in 2 weeks along with her daughter. I am trying to find them a short term apartment rental and furnish it before they arrive on the 12th. I start Rads on the 15th. My head is spinning, but I do have daughters who are helping me make this happen. MIL(mom in law) will go on hospice out here in CA. We live near Stanford, so if she changes her mind about the cyberknife, she can get tx at Stanford. Very tough times ahead.
Peaceful healing
Lisha

adventurebob

forme said:

Very difficult
Hi Pam,
We have a plan now. She will move to Ca in 2 weeks along with her daughter. I am trying to find them a short term apartment rental and furnish it before they arrive on the 12th. I start Rads on the 15th. My head is spinning, but I do have daughters who are helping me make this happen. MIL(mom in law) will go on hospice out here in CA. We live near Stanford, so if she changes her mind about the cyberknife, she can get tx at Stanford. Very tough times ahead.
Peaceful healing
Lisha

Thoughts
My thoughts and prayers are with you and your family Lisha. I'm sorry that so much is happening at once. I live in the Bay area (Marin) and would be happy to help as much as I can. Let me know what I can do.

Bob

Pam M

adventurebob said:

Thoughts
My thoughts and prayers are with you and your family Lisha. I'm sorry that so much is happening at once. I live in the Bay area (Marin) and would be happy to help as much as I can. Let me know what I can do.

Bob

Great
You're magic, Bob. Wonderful of you to offer. Lisha, when you accept help, you're being kind to yourself AND the person offering a hand.

forme

adventurebob said:

Thoughts
My thoughts and prayers are with you and your family Lisha. I'm sorry that so much is happening at once. I live in the Bay area (Marin) and would be happy to help as much as I can. Let me know what I can do.

Bob

Thank you
Hi Bob,
Thank you so much for your kind offer to help. Once we line up an apt. we should be okay. I have 3 adult daughters and a son in law who live nearby, so I will be using them as much as possible. Three weeks ago we were visiting her in Fl. Life can change so fast. It is a good thing for all to bring her "home'. My husband is the one who is having such a hard time. Worries about me and his mom and my elderly mom who we also care for and just everyday living. I seem to be on auto pilot right now. Thank you for your kind thoughts and prayers
Lisha

ekdennie

forme said:

Thank you
Hi Bob,
Thank you so much for your kind offer to help. Once we line up an apt. we should be okay. I have 3 adult daughters and a son in law who live nearby, so I will be using them as much as possible. Three weeks ago we were visiting her in Fl. Life can change so fast. It is a good thing for all to bring her "home'. My husband is the one who is having such a hard time. Worries about me and his mom and my elderly mom who we also care for and just everyday living. I seem to be on auto pilot right now. Thank you for your kind thoughts and prayers
Lisha

hugs and prayers
Lisha-
wishing you an easy transition and that you keep up your strength while you help take care of your family. I will be saying prayers for you and your family. some times it seems that it is harder on my mom to take care of me and my children than the cancer treatments are on me. make sure you take care of yourself so that you can take care of your mother-in-law. sending you a big hug. you will be in my thoughts!
-elizabeth

santa6

Holes!!!
I've posted this several times and I hope it's helping somebody. I had to do the mask for radiation and I am a bit chlaustrophobic. The mask crushed me so hard that I could not move my eyes under my closed lids and could not swallow. When I went for my "dry run" I had a bad time. Decided no meds, I would just tough it out. But, then the tech offered to cut out the eyes.

This was a complete reversal for me. That mask didn't bother me for a second after that.

They also cut out the mouth because it was making my lips bleed from crushing on my teeth.


Hope it helps.

sweetblood22

santa6 said:

Holes!!!
I've posted this several times and I hope it's helping somebody. I had to do the mask for radiation and I am a bit chlaustrophobic. The mask crushed me so hard that I could not move my eyes under my closed lids and could not swallow. When I went for my "dry run" I had a bad time. Decided no meds, I would just tough it out. But, then the tech offered to cut out the eyes.

This was a complete reversal for me. That mask didn't bother me for a second after that.

They also cut out the mouth because it was making my lips bleed from crushing on my teeth.


Hope it helps.

Good call, my mask was
Good call, my mask was really tight too. I had waffle marks and my lips bled and got stuck to the mask. Wasn't pretty when they ripped off lip skin when they took the mask off. My lips had bad burns, so they would put Saran Wrap on my lips before putting the mask on. It also dug in to my eyes and left bruises on my eye ridges so they cut out the eye holes for me too. Rest of my face still looked like a waffle, but at least it didn't hurt my eyes as bad, and give me a migraine.