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Dissapointing News Today

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I have been having some lower back pain for a few weeks now. An xray showed nothing but some arthritis. My doctor had me go in for a bone scan today and before I was out of the hospital parking lot he called me to say that the area where I was having pain had "lit up" as well as two spots on my neck. He said he would schedule a bone biopsy of my spine immediately so the are can be tested to see if it mets from my NSCLC. I am just devastated as I have been feeling very well other than the lower back pain which actually is feeling much better now. He says if it is mets I will be starting Tarceva. I am usually pretty positive, but I am stomping my feet and throwing a bit of a fit right now. I am only 57 and have a whole lot of living I still want to do.

grannylove
Posts: 183
Joined: Apr 2011

You have every right to be mad as heck! Go ahead and throw that tantrum, kick, scream, yell and cry! Then get tough as you have done before. I am praying that it is something other than mets. Keep that positive attitude that you have so often encouraged others with in their fight and struggles. You are a strong woman and can overcome this hurdle. You are right, you are a young woman and have a whole lotta living to do and you will do a whole lotta living. My daily prayers will be with you. Keep us posted on the results of the bone bio. Sending positive thoughts and hugs. Agape. Cheryl

z's picture
z
Posts: 1302
Joined: May 2009

So sorry for the results of the bone scan. I really don't know a lot about bone scans, but could inflammation light up also. I know that with pet scans the inflammation will surely light up. I am praying that it is just inflammation. If would happen to be a metasis, it must be very small, as we are always being scanned. Lori

lekkerone
Posts: 199
Joined: Jan 2011

I am so sorry you got that news. Kick the walls (or the cat) and scream if that helps. Then get that fighting spirit in gear and beat the monster again. All the best and please keep us in the loop. You are in my prayers for sure. Diane

sissylu1
Posts: 66
Joined: Jan 2011

I am so sorry to hear this news...I read this site more than I write on it and know that you have always been a wonderful source of positive support and encouragement for others including myself...you deserve to throw a pity party for yourself but after you do keep the good fight going strong-we are all pulling for you!

Dan620
Posts: 219
Joined: Dec 2009

mamacita wishing you nothing but good news from bone scan, as z said hopefuly just inflammation. Stay postive. ...... Dan

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 276
Joined: Mar 2011

That does just stink. Let me take a back seat to nobody in wishing you well and hoping for the best possible outcome.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

When we discovered my wife had bone mets, she went on zometa, then later xgeva. The zomaeta gave her flu like symptoms for 24-48 hours and was administered through her port. The xgeva is a shot, but much more expensive. BUT.... both have worked for quite a while.

You still have a lot of living to do! :)

dennycee
Posts: 691
Joined: Mar 2011

Had my back x-rayed due to pain. Turned out to be a compression fracture of the vertebrae. All the rads, chemo and steroids weaken those bones. MRI and ct's showed no cancer at that location. There really is more than one reason x-rays light up. I hope yours is one of the more benign reasons. With everyone else, I will think positive thoughts and strength your way. This is one messed up roller coaster ride we are on.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I'm not sure xrays light up as dennycee suggests, but his point is well taken. Scans can light up for reasons that have nothing to do with cancer, mamacita. At one time, I was diagnosed with as little as 10 months to live following a scan of my lungs that showed pervasive metastasis of SCC from my head/neck cancer. Fortunately, I was taking an antibiotic for cellulitis, and when they next scanned me, almost all of the lung "nodes" were gone: the antibiotic had also cleared up a lung infection that apparently lit up the night :). Their bad, my good.

I am hopeful that something along the lines of what dennycee is suggesting is also responsible for your 'lights'.

In any event you are in my thoughts.

Take care,

Joe

Glenna M's picture
Glenna M
Posts: 1579
Joined: May 2009

My heart breaks a little more each time I read of someone having a recurrence or mets or who are even concerned that this may be happening. I know how scary and disappointing this is, I was also feeling pretty good and was becoming more active when out of the blue my scans started to light up.

I'm 57 also and want to be able to enjoy many more years with my family and friends so I am going to fight this with everything I've got and try to keep a positive attitude. For now you are right...scream, cry, throw things...whatever it takes to make you feel better and calm yourself down. I allowed myself one day for a pity party and then moved on to my fighting mode, hope you can do the same.

You have always been such a wonderful support to me through all of this and I want you to know that I will be keeping you in my prayers each day. Praying this turns out to be anything but cancer.

Stay strong,
Glenna

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Thank you all for your positive words of encouragement. You are the ones who "really" know what I am feeling, how much this worries me, and the thoughts I am thinking when I cannot sleep.

Okay, enough of that. I have "Grandparent's Day" and my grandchildren's school today and I am off to make some memories!

medi_2's picture
medi_2
Posts: 511
Joined: Aug 2009

I'm thinking about you and sending good thoughts your way...You are one strong woman and you will beat anything that is thrown at you, I'm sure.
Take care!
Medi

smneider
Posts: 20
Joined: Jul 2011

So sorry to hear. My prayers are with you. It is just a lousy disease.

Hondo's picture
Hondo
Posts: 6056
Joined: Apr 2009

It is always when we start to feel good stuff like this happens to pull you back down again. Through it all stay the fighter that you are and beat its azz again.

Wishing you the best
Hondo

sleepless in jersey
Posts: 185
Joined: Feb 2011

The roar of the crowd....I could hear them all, routen for you.
Yea its nerve racking so many questions why now, why me etc...like I tell Mom have your party that nobody wants to be a part of than get back on board with that go gettem attitude that you have and kick it if thats what it turns out to be!!
Continue to stay positive...

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I hope for you that it isn't mets at all, that it's just a scan aberration or something!
♥ stayingcalm

kado4
Posts: 80
Joined: Jul 2011

Hi mamacita5...I am sorry to hear about the spots on your neck...I dont write much about my dad stage 3nsclc, but you and ex rock n roller were some of the first people that responded to my questions. I have to say, don't loose hope.Lets wait for the biopsy and see what you have first.Remember,you are alive, and have all intentions of staying alive, emotions are strong right now...pray for strength and we know that in these times, we all must be patient and enduring...you have so much to live for.I pray that my dad's PET probably sometime in Octobe is NED.Believe me,I can understand you worry.We here at CNS pray for you and hope for favorable biopsy results...Sincerely, Kado.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I received my biopsy results today...not good. I do have mets to my spine and since I am positive for the EGFR mutation I will be starting on 150mg of Tarceva. I am not sure what this means for me. I am not one to ask my doctor on my prognosis, but I do wonder how long I will have with my family. As my name denotes, I have 5 beautiful children I want to spend more time with, and a husband that I want to grow old with. I am feeling very sorry for myself right now. I wish Deb was here so I could "talk" over the whole Tarceva thing with. If anyone else out there can give some pointers in that area I would be grateful.

z's picture
z
Posts: 1302
Joined: May 2009

Hello, I am sorry for the biopsy results. I don't know about Tarceva, but I do know I visit the Inspire web site and there are many long time Stage IV survivors that are very knowlegable. I hope that you will visit that site. Deb used to be on that site and thats why I went there. There are many survivors. I know I have read where patients will have radiation and zap the met out. I know I have also read where the Tarceva will make the mets dissapear. Please keep us updated. Lori

grannylove
Posts: 183
Joined: Apr 2011

Breaks my heart to hear the results of your biopsy and I can only imagine what you are feeling. I am so very sorry you are going thru this. I don't know anything about the Tarceva except what others have posted but it appears to have very good results. I know your emotions are all over the place, and rightfully so. But I also know you are a strong individual who will never give in to this dreaded disease. You are a fighter Mamacita and I have faith that you can overcome this. You might be feeling down right now but with your optimistic and positive attitude, you won't be down for long. I am hoping that someone will post with some info on Tarceva for you, so you can have some idea of what to expect. I also go to the website LungLoveLink.org it seems to have alot of resources as well. Know you are in my prayers Mamacita. Stay strong! Agape
Cheryl

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

So sorry that you have to go through this. I think if you check Staying Calms my space she left us alot of information on it about Tarceva and websites to check. Even after her passing she is still with us and helping. Everyone is pulling for you, and just because it is mets doesn't mean you don't have a lot of time left with your family. Stay strong. Sending positive thoughts and prayers your way.

c

lekkerone
Posts: 199
Joined: Jan 2011

I am so very sorry that you got that very unwelcome news. I sense that you are a real fighter and I know you can kick this to the curb. I echo the sentiment that you will find lots of people who know about Tarceva and are doing well at Inspire. I hope you will have a look.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

I don't know much about Tarceva, but do understand it works well for those with EFGR. When my wife, was dx she had mets to the spine, ribs and femur. She was put on Zometa for bone strength. Her first line chemo did a very good job and at the time the cancer in her bones abated. Her onc has since switched her to xgeva as it is a shot, not an iv fluid. It also has better stats, and did not give her the fu like symptoms she experienced on zometa... but it is a lot more expensive and can take some hoops to get insurance to pay.

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

Thank you all for your kind words of encouragement. I am a fighter and I WILL get through this. My oncologist called with the news at 12:30 and I had my Tarceva in had at 4:00. It cost me $5.00 for a 30 day supply through my Kaiser Health Care plan. When I looked at the receipt I can see the out of plan cost for a 30 day supply is......$5088.75! OUTRAGEOUS!! I am blessed to have health coverage but what about someone who doesn't?? This is a drug that you take for as long as it keeps working for you. We're talking $60,000 a year. My sister's neighbor has been on it for 5 years! I am feeling darn lucky to have the EGFR mutation and doubly blessed to have a plan that covers Tarceva. Thanks again for the wonderful support.
Anita

laynie11's picture
laynie11
Posts: 36
Joined: Sep 2011

Hi Mamacita5,

I am cheap, so your post atou $5 for $5000 makes me happy!!! :)

Anyway, can you help me? My Mom is EGFR positive and Alk-1 Neg - can you tell me what this means?????

Love & Hope,
Gretchen

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

You can start by using Google to find anything and everything about Tarceva. Check out the web group INSPIRE and enter Tarceva in the search on that site and you can get information from people who have been on the drug. Since I am a newbie on the drug I cannot say how I will react to it. Most important is that you ask your mom's oncologist about it. I am very hopeful for your mom and myself!

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Efgr is a type of genetic muation and so is alk. Genetic mutaions are to m knowledge mutually exclusive. So if you have one, you will not have another.

The three most prominent mutations are kras, efgr and alk. Efgr and alk have targeted therapy drugs which are quite effective.

So, in your mother's case, the onc my prescribe some of the more effective efgr inhibitors. There are mulltiple approved efgr inhibitors, and one approved alk inhibitor.

trspaw's picture
trspaw
Posts: 73
Joined: Jun 2011

Mamacita,

I wish and pray only the best for you in this fight, when I was first dx I cried for six months, not because I was afraid of dying personally I just didn't want to leave my only child while he is a teenager. I'm not sure what I'll do when/if I have to face the monster again.

You are right you have so much more living to do especially if you have 5 children! What a blessing!

Good luck I will keep you in my prayers.
Teresa

Glenna M's picture
Glenna M
Posts: 1579
Joined: May 2009

I read each of the posts in this forum since the first day you posted it but couldn't respond until today. Guess I'm still having a little pity party for myself, nothing is going right lately. Add to that the passing of Deb and now your diagnosis, it just breaks my heart.

My chemo was just postponed for another month, again, and I'm getting so tired of waiting and taking new antibiotics everyday. Just want to get the d@mned treatment started.

You will do well, your a tough lady and you have a lot to live for so I know you will fight with everything you've got!!

I will keep you in my prayers.

Stay strong,
Glenna

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

We are birds of a feather. I think I moped for 2 weeks after I heard you were having problems again. I guess I equate the success of others with my own success and vise-versa. Then our beloved Deb... Then I get my stinkin' news. I am very sorry that your chemo is post poned AGAIN. Let's make a pact...WE ARE TWO STRONG WOMEN who want to LIVE!!! WE WILL FIGHT with everything we have! *\O/* *\O/* (that's us cheering each other on)

Glenna M's picture
Glenna M
Posts: 1579
Joined: May 2009

It has been a horrible month hasn't it...especially losing Deb, I still miss her so much on Facebook :( I think you hit the nail on the head, equating our success to the success of others. It's such a heartbreaking disease!!

I'm with you sister, WE ARE TWO STONG WOMEN WHO WILL FIGHT AND WIN!!! Cancer can't keep women like us down, we will kick its butt!! *\O/* *\O/* I especially like your cheerleaders.

Can't thank you enough, you have no idea how much you lifted my spirits with this response, I'm actually smiling for the first time today.

Take care my dear friend.

laynie11's picture
laynie11
Posts: 36
Joined: Sep 2011

I am one of your cheerleaders!!! I cannot do the splits, nor can I tumble, but I can pray and cheer from the sidelines!!

Give a "G" - give me an "A"!!! :)

Stay strong girlies and I am glad you have each other.

Gretchen

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

*\O/**\O/**\O/*

Glenna M's picture
Glenna M
Posts: 1579
Joined: May 2009

Thank you, appreciate your cheers :) and prayers.

I'm glad we all have each other for support. It does so much for me when I am down or having a pity party, I come back and read some of your responses and it cheers me up and helps me to continue my fight.

God bless you all.
Glenna

lekkerone
Posts: 199
Joined: Jan 2011

As Glenna said, we equate our successes or failures with those of others. This can be a plus or a negative of reading these forums.
You and Glenna are very strong an I believe you can beat this beast. I will (do) pray for you both and many on here have got your backs.

Come to us on the days when you don't feel strong and when you do. We are here for you.

Love, Diane

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

You are a sweetheart!

Glenna M's picture
Glenna M
Posts: 1579
Joined: May 2009

With you and the others here who are praying for us we can do nothing but succeed!!

Thank you for watching our backs and know that we are always watching out for our brothers and sisters and keeping them in our prayers also.

Thank you my dear, sweet Diane.

Love ya,
Glenna

sleepless in jersey
Posts: 185
Joined: Feb 2011

Hello Mamacita~ I wish you recieved better news as well, but you didn't. So now your going to put on your big girl panties and kick its... like you always have and you will again!
Just keep that positive train going!

Wish I could help you with the Tarceva, Moms on Gemzar and its in her spine as well, however I do remember seeing one of Debs write ups on side effects if you happen to have them on lowering the doses etc... let me know if you need a hand finding one of Debs amazing words of info. I will be glad to help you!

Stay strong and stay positive!!

laynie11's picture
laynie11
Posts: 36
Joined: Sep 2011

Hi Mamacita, I've been thinking about you. I am hoping and praying you are feeling well.

Enjoy those grandbabies, stay strong and keep fighting!!

laynie11's picture
laynie11
Posts: 36
Joined: Sep 2011

for your replay re: EGFR & Alk-1 mutations. I hope you are feeling well. I am sending prayers and positive energy your way.

Take care,
Gretchen

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

I have only taken two doses of the medication. No rash so far but I am moisturizing like crazy to get ahead of the game. I had some diarrhea yesterday afternoon. Every Friday a bunch of us a work get together to watch Survivor at lunch and have a meal together. The gal that cooked yesterday made an awesome Mexican spread and I could not resist. Lesson learned...I think spicy might be out for awhile. I am both dreading the rash, and praying for the rash. I have heard conflicting comments about the rash being an indicator that the medication could be working. Even my oncologist indicated that we want to see a rash. I asked for oral antibiotics to help stave of the infection that can occur but he said "No" at this point. Type the following into Google: "Tarceva® Flaming Face Skin Care Regime" there is some good information on some products you might want to get. "talk" to you soon. Anita

laynie11's picture
laynie11
Posts: 36
Joined: Sep 2011

She was admitted to the hosp on Frid, five days post her FIRST chemo treatment. The drs attribute her extreme symptoms to the delay in whatever shots were supposed to to have be administered the DAY AFTER treatment....well, due to insurance authorization, she was not able to receive her shots until Friday - day 5. My mom is still in the hospital and will be lucky if she is able to leave by Tues. Not to go into to many details, but my Mom cannot control her bowels - horrible - her IV is allowing her fluids she needs, but this, of coarse, makes her have to urinate frequently. When she gets up, she loses control of her bowels. She has not eaten in four days. I was taken aback when I say her yesterday - BLACK circles under her eyes and she is white as a sheet. She,thankfully has her humor in tact and is now back to old herself - well kind of - she is taking morphine for stomach cramps and the pain in her mandible due to mets to the mandible bone. We brought her a Sees candy today and she liked that - :)

I am just venting. Things will improve, I just know I can ***** to all of you and you will understand. I feel a little guilty venting to you all - when I am healthy.

Thanks to all of you in advance.

Love & Light,

Gretchen

laynie11's picture
laynie11
Posts: 36
Joined: Sep 2011

She was admitted to the hosp on Frid, five days post her FIRST chemo treatment. The drs attribute her extreme symptoms to the delay in whatever shots were supposed to to have be administered the DAY AFTER treatment....well, due to insurance authorization, she was not able to receive her shots until Friday - day 5. My mom is still in the hospital and will be lucky if she is able to leave by Tues. Not to go into to many details, but my Mom cannot control her bowels - horrible - her IV is allowing her fluids she needs, but this, of coarse, makes her have to urinate frequently. When she gets up, she loses control of her bowels. She has not eaten in four days. I was taken aback when I say her yesterday - BLACK circles under her eyes and she is white as a sheet. She,thankfully has her humor in tact and is now back to old herself - well kind of - she is taking morphine for stomach cramps and the pain in her mandible due to mets to the mandible bone. We brought her a Sees candy today and she liked that - :)

I am just venting. Things will improve, I just know I can ***** to all of you and you will understand. I feel a little guilty venting to you all - when I am healthy.

Thanks to all of you in advance.

Love & Light,

Gretchen

laynie11's picture
laynie11
Posts: 36
Joined: Sep 2011

I am still getting used to navigating around CSN.....I don't want to miss anyone.

So, I meant to tell you.....when my daughter and I went to Sees today to get my Mom a couple pieces of candy with no nuts (cuz my Mom can hardly chew from the met to her mandible)....the clerk asked why. I explained to her my Mom's condition. She went on to tell me her own daughter's thyroid CA went undiagnosed for four years. By the time they caught it, it has metastisised to her liver, lungs and lymph nodes. Long story short, she has been in remission for 7 years. I love to hear success stories!!!

Keep up the fight, girlie!!!!

sissylu1
Posts: 66
Joined: Jan 2011

Mamacita 5,
You continue to be an inspiration to us all...you know its ok for all of us to have a "pity party" every once in awhile and I think Debs passing hit everyone on this site hard..as you said, I kinda measure my own against others-only those of use who are club members understand this. I pray with all my heart that you respond to this treamtment with all the vigor and determination that you so richly deserve..hang in there!

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