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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/5/2009 12:30 AM (GMT -7)   
I went a couple days ago to my first Radiologist appointment. I have a 50/50 chance of radiation shrinking my tumor and a 5% chance of getting a non curable tumor when older if I do radiation. I have a week to decide if I want treatment. I dont know what to do. Does anyone else know of any other options to get rid of tumors? Chemo isnt working for me or the meds. smurf
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: CellCept, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/5/2009 1:01 PM (GMT -7)   
Oh Smurfy.  I don't have any advice on this, but wanted to give you my support and encouragement.  You have a big decision to make.
If it were me... I would probably go with the odds and do the radiation. But that's easy for me to say when I'm not faced with the problem isn't it!
 
Keep talking to your specialists about your concerns and hopefully they will offer their best advice for you.
 
Please keep us posted, okay?
 
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/5/2009 6:27 PM (GMT -7)   
I am like Ginny I don't have any advise for you, just wanted you to know you will be in my thoughts and prayers. (((( hugs ))))
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/5/2009 7:18 PM (GMT -7)   
I don't know Smurfy but you might ask the doc about the treatments and what they do to your stem cells. Some treatments damage your bone marrow/stem cells and if you need a bone marrow transplant later you are not a candidate. I don't know which treatments are the bad ones. This is something I'm afraid of and is the only thing I know of as a big thing to watch out for. I was dx with possible lymphoma and my eyes are affected too, and the docs told me that if they treated me and it wasn't lymphoma, I could get it. Idon't know your age and what meds you've been on and even if I knew them, I wouldn't know enough, but the stats seem to be incomplete because there is some consequence to not getting the condtion managed. 5% is not that high, and if you would get a tumor, would it be operable even though not cureable? I wish I could help, I can only try to be a sounding board for what you wrote and pray and wish the best outcome and treatment for you. Maybe its time for a second opinion with someone really good, not saying your doc isn't, but sometimes hearing from anothergood doc might shed different light and they may know something new.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 3/5/2009 9:02 PM (GMT -7)   
cancer is a subject close to my heart since my dad passed away 2 years ago from cancer . . . he had his first bout with cancer in 1982, had radiation treatment and was considered cured for 25 years. Yes, he did get cancer again and it took him the 2nd time, but we had 25 years with him that many families do not get with their loved ones in the same situation.

it's a tough decision to make . . . they have made so many strides in the last 25 years with cancer research and treatments and goodness only knows what they may develop in the next 25 years. but then, you do not want to live always in fear of whether another tumor is going to be lurking around the corner that will not be cureable.

I do know that most dr.s operate under the protocol of "if you opt for radiation once, you will not be able to use the radiation option if the cancer returns or if you develop a new tumour" . . . i urge you to explore your options with your doctors and get as much information as you can before you make the radiation plunge . . .
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/7/2009 1:11 AM (GMT -7)   
Thanks I've requested my oncologist to be at my apt on Monday with the radiologist. He's the one refered me to radiation, so it would be good to have him there. I also am bringing in family. Thanks.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications:  Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/7/2009 7:33 AM (GMT -7)   

Hi! Smurf,

You do NOT have to decide in a week. And remember that in a 50/50 odds deal, 50 people out of 100 do better. And one thing I know as an old nurse, you probably have way too many family and friends pressuring you, however well meaning. I believe in the power of prayer, and just want you to know that ANY decision YOU make for YOU is the right one. And it is ok to fight with every ounce of your being, but ok to say when you have fought enough. There is hope you might get better doing nothing! And when our burdens and our illness seem more than we can bear, put them aside, for just a minute, or an hour. How would we eat an elephant? ...... One bite at a time.

smurf, too

Prayers sent your way.


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/7/2009 3:59 PM (GMT -7)   
The decision has been made. My family was against my decision, but I am going ahead with it and trying radiation. I said yes under the recommendations of both my primary care doctor and my oncologist. My oncologist was the one who refered me to radiation, and I was able to talk to him on the phone. My primary doctor, also called me and talked to me about it and recommended it. I figureed with two doctors saying they would do it if it was them, I oughta try it. Wish me luck and keep praying. Hey nurse, how are they gonna keep me still? I never sit still....let alone sleep still. Only time I sleep staying put is when I'm sharing a bed with someone (kids LOL). I'm such a nice aunt, i let the nieces and nephews crash with me LOL. Guess its cuz I hardly see them and they wanna be with me when I do see them, so I just give in lol.
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications:  Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 3/7/2009 5:36 PM (GMT -7)   
smurfy,

i wish you the very best with your decision to go ahead with the radiation . . . like i said in my previous post, my dad's radiation therapy bought him 25 years before his 2nd bout with cancer . . . i can only pray your course will buy you this and more . . .

my thoughts and prayers are with you
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/9/2009 3:24 PM (GMT -7)   

Hi! Smurf to smurf,

Deep breath, good for you. Remember, you get to make the best decision for you that you need to make at the time you make it. Did that make sense? And radiation txs are way better now than they used to be, they take aim, tell the computer to do it's thing, and blimey, the tx is over. Many pts. chat or doze, and I wondered if you might want to write in a journal? Sometimes just thinking some thoughts that are comfy, or of things you might want to tell your children, can pass the time during your treatment. Some people really like to write in a diary, or journal, I believe it was very therapeutic for me. I actually ripped out afew pages after I wrote them, after I had a chance to reread them. I was in the hospital with a serious infection after my son was stillborn from strep, and I journaled for years. I make my students write in one after they do their work experience in the nursing home. Do you knit or crochet? You can't move during the actual tx. but afew stitches here, a few there, make a scarf, or a baby blanket. It really is easy to learn from those little books, and google picture directions on the computer. The nurses will be happy to talk to you, and pad you down with pillows and blankies. If you like, bring your favorite one. Or a teddy bear. Borrow a stuffed toy from one of your family members if you like, I think ipods or mp3 players are good, too. I think you could even find one of the nurses to help you learn knit or crochet, bet a nickel.

Hugs,

smurf,too

p.s. are your kids in school?, you could perhaps take turns bringing them with you to your treatments, just write the school a note, pack a bag of snacks, or if the budget allows a stop at McDonald's? Or a picnic in your bed when you get home. You might find your kids would like to "cook" for you on tx days, tomato soup, PB&J, something to look forward to that will help take care of your heart, and knowing that your family wishes they could make you better, that letting them help in an active way might help them cope with some of their heartache, too. It is so hard to watch someone you care about suffer, And lastly, I know, I do go on, one day at a time.


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 3/11/2009 3:34 AM (GMT -7)   
Hey those are great ideas thanks! I crochet, and read. The only one in school is a preschooler...I dont think a day would hurt him. I talked to the doctor about being ADD and they prescribed some Adavent...anyone familar with it? What is it like? What does it do? Can you care for a kid whilst on it? I start my radiation on Tuesday. Also I fitted the mask on Monday for my head and hat a CAT scan. I freaked out shocked   cuz Im clastrafobic, and the mask litterly straps your head to the board thingy. I'm also motion sensitive and I tried to climb out of the contraption when the bed thingy moved cuz it scared me real bad. I had some traumatic experiences as a kid, and I cant stand being like that. In answer to the journal, I prefer to free lance poetry (thats poetry that doesnt neccessarily rhyme). Here's what I did during chemo...
 

Wings Of Love

Losing my hair, muscle spasms, getting ill,fevers, and so much more its hard to explain. Doctor's say its apart of all the medications skill.

 

Day after day I endure the pain, Catch me, I'm falling, falling like a leaf.Hold me, hold me like there is no tomarrow.For all this chemo is giving me grief. Know if there is no other day, I will be right here waiting for yousending my love in a heart felt way. wondering if I will make it.But I am fighting for your love's domain.

 

Catch me, don't let me drop when I fall. Love me, don't ever stop. Wrap your arms around me and hold me when I call.

 

Crying so much its like how the wind blows. Wanting to go back to normal life, knowing I can't. Tired of the chemo and its throes.

 

Tired of being glued to the john, head over a trash can.Just shoot me, c'mon.

 

 

Catch me, I'm falling, falling like a leaf.Hold me, hold me like there is no tomarrow.For all this chemo is giving me grief.

 

Know if there is no other day,

I will be right here waiting for you

sending my love in a heart felt way.


 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications:  Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/14/2009 10:59 AM (GMT -7)   
Smurfy, Your poem made me cry! I did chemo and could feel your pain and misery! I'm so sorry for what you are facing. Please know that you are in mythoughts and prayers. Writing is so therapeutic! It's a favorite pastime of mine! God bless and keep you, judy
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