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Latest MRI...

camul's picture
camul
Posts: 2043
Joined: Dec 2010

I have had 2 MRI's, one Dec 26th, the other Jan 15th.  The first was on my Thoracic and Lumbar Spine, and Tailbone.  It showed increased cancer.  Developed a white noise kind of like a low pitch sound like the old tv tuners where they kind of wistled as well as sometimes crackling noise, they come and go.  Told onco about it, thank you Linda,  thinking I had water in my ear.  My ears were clear, hence, he ordered MRI on my brain and Cervical Spine. 

Got the results Friday.  Hw was surprised, my brain is clear!  However, cervical spine/clavical is covered with cancer over nerves,and ther is increased swelling which he is pressing the nerves and causing the noise.  I was just happy I wasn't hearing voices!! (laughing)

I was approved for another chemo.  Xoleda and w/oral Herceptin.  He mentioned this 2 weeks ago and I spent 2 weeks agonizing over what to do.  I know, it seems like it would be easy, yes I want to live so I will do the chemo...  but in my case it is not that easy.  After 2 years on chemo, the cancer continued to grow, spread etc...  and with the 2nd to the last chemo, I started getting UTI's over and over.  I was on 10 antibiotics in less than 9 months, as soon as they would end, within days another one.  Cultures came back positive and a lot of blood in my urine.  So I was back to the Urologist who resectioned my bladder in 2009 (they initially diagnosed me with bladder cancer,biopsy of the resection came back, 'atypical, not yet cancer)'.  He suggested a low dose of antibiotics indefinately to ward off a septic infection.  I was told my body could no longer tolerate chemo.  They stopped the chemo the first week of September. 

6 weeks later, my onco offered Afinitor and I agreed.  Within 3 days I had trouble breathing.  Chest x-ray said lungs were clear so they treated me for Bronchitis=another Antibiotic, cough syrup and Steroids. chest still got tighter.  Then itchy open sores from head to toe.  I went to Rite-Aide to get cortisone cream.  The phamacist looked at my sores and asked me what meds I was now on,  told him Afinitor and he made me call my doctor on the spot.  He said it was a serious allergic reaction to the Afinitor.  The onco on call told me to stop the chemo, and either buy Benydrl and double the dose until I could get in to see my doctor, or go to ER to get a shot or IV,  I told the pharmacist about the breathing and he said I probably had the open sores in my broncial tubes as well, that I could die from it. 

Within 30 hours of stopping the chemo my chest was clear and the sores were healing.  For the last 17 of the 31 days on Afinitor, I was sleeping about 20 hours a day.  My onco again stated my immune system was no longer able to tolerating chemo. 

2 1/2 weeks ago when he mentioned another chemo, I was totally taken a back!  On Friday when he told me insurance approved the chemo, I asked him why the change.  If my immune system couldn't handle any more chemo 8 weeks ago, why could it now?  I asked him the chances of having the same issues or worse with this cheno?  It would be taking a chance. 

I decided after talking to my onco and family, not to do more chemo at this time.  However, we will keep this as an option for the nest 90 days! 

This has been such a hard decision.  One minute I would decide to do it, then I would worry about this being what does me in.  Then I would decide against it and worry that maybe this is the chemo that might stabilize or even put me in a remission.   I discussed all of this with my onco and he agreed. He was not pushing chemo on me, he was giving me an option! Both scenarios are very real possibilities (although remission would be a stretch)!  2 years of chemo has not given me the gift of remission, but we both believe that chemo or Herceptin has slowed the progress and has given me 2 more years of life!!  As far as they can tell, the growth is the same on Herceptin as it was on herceptin and chemo, but there is so many tumors that they look at the whole area and see where increased cancer is. 

I have to believe that the decision that I made is the right one for me!  For the first time in 2 years, food tastes good and other than increase in pain, I feel like there is some quality to my life again!  For the pain, I agreed to increasing the dose of Fentanyl, as I have been fighting that for months!  It took a few weeks to get use to the higher dose, but I do feel some relief!  Now if only there could be a way to really make this easier on my family!

 

Hugs, thanks and prayers to all,

Carol

 

 

 

McMarty's picture
McMarty
Posts: 200
Joined: Nov 2012

Carol,

I'm speechless.  I think the hardest thing is watching the looks on the faces of our family members.  Sometimes there just aren't any exact right answers and this sure seems like one of those times. You really do have to make decisions that give you the most peace.  It's really nice to hear that you are feeling better and enjoying food again.  It's funny how much little things like that mean. 

You are in my prayers and I'm hoping you have MANY enjoyable days and make some special memories with each one you care about. 

Hugs to you,

Marty

New Flower
Posts: 3993
Joined: Aug 2009

Hi Carol

i am very sorry that you have been struggling with your decision. It is a place nobody even imagine to be 

I am completely support you ,however is your new Chemo called Xeloda?

this the one I have been on it for almost 8 months. It is a very reasonable drug, no hair loss, even my taste buds are ok. The regimen is week on week off, oral medication. The best part it reduced my pain very quickly I do not use patches anymore.

hugs and positive thoughts to you

 

smalldoggroomer's picture
smalldoggroomer
Posts: 1181
Joined: May 2010

Carol,

I'm so sorry to hear this. We all wish we never had to make these decisions. But you now have to do what is best for you. I pray for peace, and that pain meds work well for you. Please keep us post when you can. You are in my prayers every day. Love you sister,

Kay,

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Carol, I don't comment too much on posts these days, but I always check in on a few pink sisters, like YOU.  You have been through so much and always with your typical positive attitude.  Only you can make the decision on what to do and I get the feeling that those are well thought through by you. 

I have been dealing with my Stage IV dx since August 2010.  I have been on chemo, Abraxane and Eribulin, since that dx.  I had to be taken off the Eribulin due to severe neoropathy in my feet and legs.  My onco next recommended Xeloda.  I have been on it for a short time, only on week 2 right now.  I was very apprehensive about taking this one due to the "hand and foot syndrome" side effect.  I have to report, so far so good.  I may have a little redness in my hands but I am not certain if that's from wringing them or from the chemo.  I have an appointment this afternoon and will find out.  The best part is my hair is coming back in and I will hopefully get to ditch the scarves in a couple of months!!

Take care of yourself and I'll check back in on your progress later. Enjoy your new found taste buds and improving quality of life!

(((Hugs))),

Debbie

 

 

MyTurnNow's picture
MyTurnNow
Posts: 2694
Joined: Aug 2009

Carol, I don't comment too much on posts these days, but I always check in on a few pink sisters, like YOU.  You have been through so much and always with your typical positive attitude.  Only you can make the decision on what to do and I get the feeling that those are well thought through by you. 

I have been dealing with my Stage IV dx since August 2010.  I have been on chemo, Abraxane and Eribulin, since that dx.  I had to be taken off the Eribulin due to severe neoropathy in my feet and legs.  My onco next recommended Xeloda.  I have been on it for a short time, only on week 2 right now.  I was very apprehensive about taking this one due to the "hand and foot syndrome" side effect.  I have to report, so far so good.  I may have a little redness in my hands but I am not certain if that's from wringing them or from the chemo.  I have an appointment this afternoon and will find out.  The best part is my hair is coming back in and I will hopefully get to ditch the scarves in a couple of months!!

Take care of yourself and I'll check back in on your progress later. Enjoy your new found taste buds and improving quality of life!

(((Hugs))),

Debbie

 

 

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Carol,  I'm glad you asked about your ears...now you know your brain is still clear.  And that is great news my friend!!! 

It seems to me, that you have given this incredibly important decision a great deal of thought and consideration.  You've consulted your family and your doc, taken their input, and then come to your own conclusion.  In my opinion, that is how wise decisions are made.  And you are truly a wise, strong person.  I have always admired that, and I have learned so much from you!

Keep feeling better and better, and post as you can.

Hugs,

Linda

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Hi Carol,

I'm glad that you are at peace with your decision, one that only you could make.  Quality of life is the reason to live.  

Hoping the increase of your pain patch will help you out.

Wishing you the best in this journey,

 

Doris

Double Whammy's picture
Double Whammy
Posts: 2278
Joined: Jun 2010

and I support it - and if you change your mind, I support that too.  On one hand I think it is wonderful that we are allowed to make our own decisions regarding treatments while on the other hand, I wish someone else would do it.  Nonetheless, that we have this option and understanding our disease is empowering.  You have handled all of this information, as difficult as I'm sure it was, with intelligence and grace.  Thank you for letting us know. 

Hugs,

Suzanne

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

Carol, my heart breaks to read your post and all that you have suffered.  It sounds like you have come to a very thoughtful decision., one that may be the very best for you.  We are all here for you!  Big hugs and prayers.

VickiSam's picture
VickiSam
Posts: 8255
Joined: Aug 2009

Like so many other Sisters in PINK, my heart is breaking, tears flowing.  However, as I take a step back, I realize that you have done EVERYTHING to keep the beast from taking every piece of your health, body, and soul.

I applaud your decision, as difficult as it was to make -- and I pray for you daily.

I adore you, and LOVE you dear Carol.

Gentle hugs,

Vicki Sam 

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

I just want to give you a huge CYBERHUG!!!

Jamie

roseann4
Posts: 994
Joined: Sep 2009

I believe we each know what is right for us and what we are willing to put our bodies through.  I am glad you are enjoying life again.  That may be the best medicine of all!

Love to you...Roseann

camul's picture
camul
Posts: 2043
Joined: Dec 2010

for all of your support and prayers.  This disease does suck, but at least when I come on here, I know that there is someone who understands and that means so much to me.  Doris, I tried to send a PM, but it says it is blocked.  For both you and CC,, I will continue to pray that when you see your doctors on the 18th you both get some good news.  And Doris, I hope that there is another med that will work.  I know first hand that chemo is not always the answer. 

I am so sorry that it took a bit to respond, but sometimes I just can't bring myself to move forward.  I wish you all the best.  Today, I am having Acupuncture to try and help with the pain through the Cancer Wellness House, then on to Herceptin as well as Vitamin B and Xgeva, so I will be sore for a few days at least. 

Big hugs, and thanks. 

Carol

Jean 0609's picture
Jean 0609
Posts: 2322
Joined: Jun 2010

Dear Carol,

 

Just wanted you to know that you are in my thoughts & prayers.  Glad you are enjoying food again.   Sending hugs to you.

 

xoxo,

Jean

 

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