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Shingles on the top of everything - where is my break?

New Flower
Posts: 4098
Joined: Aug 2009

Hello everyone,

it has been several weeks ...

I have started an experimental drug BKM120 a week ago, the Study did pharmokinetics on me I spent 9 hours in Chemo clinic with 4 blood drawns  8 tubes each time.

Today I was diagnosed with shingeles , I have to stop anti-cancer and start antiviral to treat shingles my back and shoulder on affected side are in blisters. I think I deserve a break , just a little one.

Thank you and my best wishes to all pink sisters and brothers

New Flower

 

Jean 0609's picture
Jean 0609
Posts: 2343
Joined: Jun 2010

Sorry to hear this.  Yes, you definitely need a break and I hope it comes soon.

 

xoxo,

Jean

 

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

I am so sorry that you are experiencing this... I have had shingles and they can be very painful... One little know thing about shingles is that you can give them to someone that has never had Chicken Pox, so if there is anyone friend or family that has never had Chicken Pox, please advise them if exposed.  You can also give Chicken Pox to children if not immunised for Chicken Pox.  When I had them I took an antiviral and steriods and the rash was gone 3 days later. I'll add you to my prayer list. Take care, God Bless, Kathy

VickiSam's picture
VickiSam
Posts: 8419
Joined: Aug 2009

YES,  you deserve a BREAK --  Darn it!!!   I am so sorry to hear this --- I hate, hate, hate that you are going thru yet.  Linda (Gabe & Abby's mom) has suffered with shingles for months -- I am hoping she gets a chance to see this email and can provide you with some guidance on what has worked on her, and what has provided some sort of relief.

Cypress Cynthia -- also suffers from those darn shingles as well --

I am so sorry my beloved Friend.  Prayers and positive thoughts going your way.

Vicki Sam 

 

 

CypressCynthia's picture
CypressCynthia
Posts: 4015
Joined: Oct 2009

Oh no!  That's terrible!  I am so sorry to hear it and hoping the pain is not too awful?  Hang in there.  Sending big higs and prayers!

TraciInLA's picture
TraciInLA
Posts: 1858
Joined: Jul 2009

Дорогая Олга,

I'm so sorry, this just isn't right.

I've often insisted to my minister that she should have access to some kind of 800-number, email address, special hotline, to register complaints when sh*t like this keeps happening to people we care about....it isn't fair.  You of all people deserve a break sometime soon.

Traci

 

Double Whammy's picture
Double Whammy
Posts: 2333
Joined: Jun 2010

You name it, I said it.  Just didn't want to post anything offensive.  I, too, have had shingles, but to have shingles when in treatment for cancer is just not right.  I hope they caught it in time for the anti-virals to get in there and do their work.  And do it quickly so you can get back on the anticancer meds. 

I'm just so doggone sorry for you. 

Suzanne

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I'm praying you get relief from the shingles and can get back to fighting the cancer soon.

HUGS!!!

Jamie

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

You deserve a great big, huge break.  You have had your share of stress lately and I am so sorry this has happened to you.   I've had shingles a couple of times and know the pain of it all.  I hope that yours will be short in duration and be back doing your treatments.  I was wondering about you and sorry to hear it's shingles.

Best to you,

Doris

New Flower
Posts: 4098
Joined: Aug 2009
Dear Sisters,
Thank you very much for your support and carring messages.
No relief  yet. Your prayers and positive thoughts are highly appreciated. This new challenge feels so wrong. Every time when I get adjusted  accepting my new normal, I am facing another obsticle on my way of living my life. Honestly I am losing my sense of humor, while I understand that many fellow survivors have been battling worse. 
I have a ticket to San Francisco for the event I was planning for months… I hate cancer, which is trying bring me to my knees.
Sorry  boys and girls
Love you
Olga
Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Olga, please don't be sorry.  I think shingles are enough to bring a healthy person to their knees.  I never experienced such debilitating pain.  I took an antiviral (was still taking it till yesterday)  The doc also put me on gabepentin (neurotonin) 1800mg a day to help control the nerve reaction.  It's actually an anti-convulsant.  I still take it as I still have nerve activity in my forehead, but I'm down to 900mg a day.  They gave me several painkillers in the hospital, they were injecting morphine along with the pills...there is a lot about the hospital I don't rememeber.  Finally, i have lidocaine patches that I wear on my forehead most nights.  I only wear them at night because they last 10-12 hours and that keeps the nervieness and headaches away.

My doc has told me several times how hard it is to treat because the docs just don't know enough about nerves and how they work.  I am so sorry you have to deal with this.  Many hugs to you my friend.  (I promise to avoid the sore areas!)

Hugs,

Linda

 

New Flower
Posts: 4098
Joined: Aug 2009

 

I am having a very difficult day tooday. Linda, thank you for your tips affected area has been growing despite anti-viral medication. My oncologist sent me to an Infectious Diseases Specialist, who confirmed shingles.He suggested to continue with anti-viral Valacyclovir for 7 days and stop steroids. His assumption is that my new cancer treatment compromised or impacted my immune system causing shingles came out.

Sorry, I cannot be here for others however  you are always in my thoughts 

here is the picture of my shoulder and back.

Warning: it is not for the weak of heart

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

I have a lot of autoimmune diseases and some of the conditions are brought on by stress; such inverse psoriasis, fibromyalgia and shingles.  Everyone of them are extremely painful, as they involved nerves.  Though I have the right stuff on hand to nip two of them in the bud, it doesn't always work.  I hope what the doctor gave you will begin to work for you.  I think stress has a lot to do with lowering our immune system.

 

Whenever I am stress and I know if I don't knock it off, I will have one of these conditions.  Now some of you might think I'm nuts but when the stress comes on I think of that old musical "South Pacific" and one of the songs "Happy Talk",  and hum it to myself over and over until I start to relax.  It helps me relax.   I also watched movies in the middle of the night when the pain was more than I could stand.  Distracting yourself anyway that works.

 

Everyone will have something that works for them.  For me it's the song.  It is so easy for us to stress out if we think to much about our own situation dealing with advanced cancer.  I can write online about it but alone, my mind at times goes where it shouldn't go.  I think of Happy talk or how other people in the world have had to suffer.  This week is easy the people in the marathon, those who lost their love ones, those who had horrid injuries and the people in the heart of Texas who have suffered so much lost in the awful accident at the fertilizer plant.   I try to think of something happy, good memories I can dwell on while I hum.  It usually works.  I took the LaMaze childbirthing classes and was amazed to realize that when your mind is elsewhere, you can pretty much endure the pain because the focus is on something more pleasant.  

 

I wish you well Olga and I hope you start thinking some happy thoughts as you deal with shingles and hope they clear up asap.    Distracting yourself in whatever works for you.  

 

Best,

 

Doris

 

camul's picture
camul
Posts: 2119
Joined: Dec 2010

Hopefully, Your hreak is coming. Got to think it is a good thing for it to show up now so at least th You know that it is shingles and they didnt attribute it to se of the chemo and stop what is working for good.
Still does not make it better, but will pray that it goes away soon without too much discomfort and pain. From everyone on this board, it comes in all strengths.
My prayers are with you on this one,
Hugs,
Carol

Bella Luna's picture
Bella Luna
Posts: 1575
Joined: Aug 2009

Sorry to hear another hurdle has blocked your path.  It has not been easy for you and, yes, you do deserve a break.  I pray the medications the doctor prescribed offer some relief.  Olga... if you enjoy music, turn it up; if you enjoy being outdoors in the sun, go outside and drink it up; if you enjoy dancing, dance away with Andre.  Do something that will help you escape from this difficult time.  Try and focus on something that you love and brings joy to you.  I understand it's a hard time for you.  Big hugs to you.

 

Your Sister in Pink,

Ines

sea60's picture
sea60
Posts: 2601
Joined: May 2010

Grrrr...shingles?! I know I had the chicken pox virus and my Mom had shingles. It's so very painful. I hope you feel better FAST. Sending you hugs and prayers sweet  sister.

Sylvia

New Flower
Posts: 4098
Joined: Aug 2009

Thank you all for your support, hugs and prayers. I am doing better my shingles have been contained and stopped spreading to different body parts. My left back quadrant is covered by dry crust from shoulder to waist. I still have to take vacodin every 6 hours, however hubby took me to the ocean to see sunset.  My doctor wants me resuming an experimental drug tomorrow, I am not sure about that. Your help as always has been a crucial part in dealing with this new challenge.

Thank you very much

Olga

 

kmenurse's picture
kmenurse
Posts: 223
Joined: Apr 2013

So glad you shingles are under control.  As I said I have had them and know how painful they can be.... Best of luck with your experimental drug treatment... God Bless!   Kathy

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

Hopefully you won't need the pain meds much longer.  Watching the sunset over the ocean sounds wonderful.  I'm surprised your doctor isn't giving you more recovery time before resuming the experimental drug.  Obviously, he isn't the one suffering.  Take care of yourself!

HUGS!!!

Jamie

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

For me, the ocean has always been very calming and healing.  Yes, you've got quite enough to deal with right now.  I'm hoping you can continue treatment soon and knock that cancer right out of the ballpark.

 

Hugs, Renee

aysemari's picture
aysemari
Posts: 1590
Joined: Dec 2009

grant you the much needed break Olga. I am offering you my positive vibes and lots

of hugs. Sure hope there will a good outcome to your new drug. Stay positive and

keep us posted.

 

Love,

Ayse

New Flower
Posts: 4098
Joined: Aug 2009

Thank you all for your positive thoughts. 

I am feeling better, resumed my clinical trail treatment. I have had my  Faslodex shot on Thursday and BKM120 daily pills since Wednesday. My back is still covered with crust and very painful, however it is manageble. I am staying in trails. My next scan is on 5/22.

Hugs 

Josie21
Posts: 359
Joined: Nov 2012

I am so happy you are feeling better.  I pray you get a well deserved break and do great with your clinical trial.  I am sending positive thoughts, hugs and prayers your way.  

Ginny

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