Is this aa bad sign?
 

I am stage 4 with mets to lung(zapped), brain(zapped), skin(active), bone(active). I am on herceptin and navelbine weekly. I take 1 steroid (2mg) daily. I have the round puffy face and I now look 6 months pregnant which I put down to the steroid.
I sat beside a lady yesterday who takes 10 steroids and she looks slim and normal.
Why do I turn into a roly poly barrel, is it a sign that I am near terminal now? Has this happened to anyone else? Is there something my oncologist is not telling me? She tells me I have outlived the time she thought I had.
If anyone has any info on steroids please pass it on and thanks in advance.

Re: Is this aa bad sign?
 

Delany, I cannot answer you specifically except to say it is best not to compare ourselves to someone else. We all react so differently to things. The other patient may not be on the same meds. I hate that you feel it is a bad sign. I have always associated steroids with puffiness, if that is any consolation. I hope your doctor can offer some clarification and that you get some peace of mind. Keep the faith.

Re: Is this aa bad sign?
 

Helen my Onc told me I'd gain a lot of weight and likely not lose it on steroids before I began chemo, in truth I lost a stone I could'nt afford to as was alreay quite skinny and petitte !
Nothing I have ever read has related weight gain to cancer progression at all and think this is usual for steroids and this lady may be having the reaction I had.

My hubbys younger brother has always had bad asthma and in some of his childhood pics he looks like the Michelin man from ther steroids he was taking but as an adult is vey thin so I do think we all are different in how we react to them.:)

Re: Is this aa bad sign?
 

1. Your doctor doesn't know how much time you have. She never did. Nobody knows that. There are woman who have lived with mets for 10 or 20 years. They outlived their doctors expectations too.

2. Everybody reacts to steroids differently. They never made me gain weight but they did make me hungry. But, a friend of mine who took the exact same thing got the "moon face" look. I am terminal, she is not.

It doesn't sound like you trust your doctor. If you want to know where you stand in relation to your health, you need to make it really clear to your doctor "I want to know when my time is near." Even though your doctor may not know, they should always tell you what they think.

I think that it might help you to learn about the dying process. Maybe there is some information that your doctor or hospice can give you that will help ease your mind. If you are still responding to treatment, and if you are doing okay, than I am guessing you are nowhere near to dying. But I don't know you, you should ask your doctor. It doesnt' seem like you are going downhill based on your sig line anyway! You may have years left, who knows? Good luck!

Re: Is this aa bad sign?
 

Maybe I missed something but saw nothing in this thread that related to a fear of death?? I think the poster was simply wondering why she's having weight gain which I think is the norm when taking steroids when other's are not Cool breeze:)

Re: Is this aa bad sign?
 

She said this, "Why do I turn into a roly poly barrel, is it a sign that I am near terminal now? "

And, she said this, "Is there something my oncologist is not telling me? She tells me I have outlived the time she thought I had."

I interpreted that to mean she was worried her death was near. What did you think it meant?

Re: Is this aa bad sign?
 

My Dad has stage four lung cancer he had to take steriods for many months. His belly got large, once he was done with the steriods it took about 9 months for it to go down but it did go down. He has never been a heavy man. He to was unhappy with his belly and thought he would never lose it and he did. I hope this helps a little. Peace

Re: Is this aa bad sign?
 

A couple of years ago, prior to bc, I was on steroids for 2 months due to a severe allergic reaction. I currently get decadron iv 2x/week and have had the same se with and without cancer: weight gain, shiny round face, swollen abdomin, vision problems and lastly, an acne breakout.

Re: Is this aa bad sign?
 

Delaney, our hearts are with you. Many on here will pray for you, including me. I feel your fear.
I just finished reading an autobiographical book and yes, steroids during treatments can make you very fat. I was just looking at a photo of me getting chemo last fall and I was shocked at this gigantic round balloon of a face I had! thank God it is coming off gradually and getting better. Another side effect of the accompanying steroids the author mentioned was anger...I certainly had that too. Best of luck and keep us posted. We are with you.
Nora

Re: Is this aa bad sign?
 

I think your reactions to steroids are more common than not.
Steroids are a bit notorious for such side effects.

Re: Is this aa bad sign?
 

Thank you all for your replies. Am glad to hear that the effects eventually wear off when you come off the steroids. I just hope I get to a good enough place to be able to do without them.
Coolbreeze, I have been told I am stage 4 incurable but when I asked how long doc said he couldnt say as I was responding to treatment. Some days I feel good and enjoy it , other days I wonder is this the beginning of the end, when I feel bad.
I have always been very slim so I hate how I look now but my family say they just want to have me around so I must stop moaning. Its amazing that one 2mg dose of steroid makes me crave food all the time, I have to stop myself giving into the craving, it really tests my willpower.

Re: Is this aa bad sign?
 

Hi Delaney. I am sorry you have that side effect. I know that for some it sounds minor to be concerned about our look compared to our other problems but I understand so well. Then we also think that the changes are bad signs when they are only the usual side effects. Why are you taking steroids today? Is it a part of the brain treatment you had? I am asking because I had no steroids with Navelbine. Michka

Re: Is this aa bad sign?
 

Hi When I was on 2mg of decadron it elevated my blood sugars to the 200-300 levels, the "looking like you pregnant" moon face, extra hair on face, fat pad behind neck, are signs of what is a form of Cushings syndrome.
I gained the weight above the hips but lost great amounts of lower leg muscle, I was so weak I could not get off the toilet by myself!!

after tapering down off the steroids over a period of time, I was able to go back to diet controlled blood sugar regime, and I eventually lost the swelling and went to lots of physical therapy to regain muscle strength. Steroids have their place, and can be life saving, to reduce swelling, yet it is tolerated differently, by each individual.

Some people will be up all night working puzzles(ME), cleaning house with bursts of chocolate and over abundance of energy, or be so body aching that it is hard to do much at all.

No one can tell you when it is your time to go, that is between you and God! Most of us have defied the "death sentence" that was in the past that came along with stage 4 cancer.

With more and more new treatments, treatments tailored to the individual versus " the standard protocol", Lots of women are living with what I tell others is a Chronic disease. I monitor my health with frequent (dr, lab, MRI, Pet/ct) Appointments. If there is a concern we address, plan and execute the next step. This board was my saving grace for support, genuine medical research and treatments that I can take to my dr and discuss, what others are doing treatment/ side effects. Lurking without posting, praying, weeping and loving on others to help them in their journey

For me the known is better than the unknown, so I can face it , fight it and move on with my my life as a child of God, daughter, wife, mother,grandma, friend, advocate, caregiver, and a just plain stubborn Nurse patient. (I am a NURSE). I will be 45 this year.

If you are not comfortable to communicate with your oncologist, go find someone else if you can. It is OK not to be tied to negativity. (AS long as insurance, travel etc) allows to to change.

Sorry so Long, Good wishes and prayers to you

Darita

Re: Is this aa bad sign?
 

Not sure if this is pertinent. But this AARP article emphasizes on the danger of 'belly' fat.

http://www.aarp.org/health/healthy-l...belly-fat.html

Re: Is this aa bad sign?
 

Hello,
I agree steroids have many side effects. I gained 15 lbs on Taxol - regular chemo, I was a little surprised but the oncs said better to gain some weight than to lose too much so......
Also if you're uncomfortable with your onc's advice, get another opinion. that doesn't mean you want to change oncolgoists only that you want another opinion - often a good idea when one has a serious disease.
good luck
health and happiness
sarah

Re: Is this aa bad sign?
 

Sarah,
Totally off point but......what a cute doggie!

Look for the good signs
 

I was 4th stage w/a 9 cm tumor that required mastectomy and the removal of 21 lymph nodes. 3 yrs later I recurred and was, glumly told -- WHAT YOU HAVE IS INOPERABLE, INCURABLE AND YOU WILL BE ON LONG TERM CHEMO THERAPY FOR THE REST OF YOUR LIFE. I was devastated. Generally positive and full of belief, I crashed. The rest of my life looked like I wouldn't last past the expiration date on the milk in my refrigerator!

Then I saw other oncs. One said, What you have may be inoperable but that's a good thing. You'll be strong to take the chemo. You're young (I was 53 then) and in good health -- I silently laughed, Just a little cancer is all -- you'll do just fine, said onc #2. And regarding incurable, he said, Cancer is a chronic condition. You have flare ups, we treat, you get better. And he recommended Navelbine as it was a kinder gentler drug than the Taxol the first onc recommended.

Onc #3 recommended (in '98) Taxotere. Herceptin had JUST been approved, fast-tracked by the FDA a month after my metastasis and was added 2 mnths later, to verify the effectiveness of the chemo (checked by CT scan @ 8 wks). I asked this onc why Taxotere? I was of course a confused lay person fighting for her life.

Because what you have is a highly aggressive form of cancer and Taxotere is the most aggressive weapon we have right now in our arsenal. It was clear to me that I needed to fight fire with fire. Take the harder road. Give it my best shot.

The docs thought I had a year. 5 at the most. Less than a 15% chance of survival.

I have outlived my prognosis. Outlived my wonderful breast surgeon's life, may he rest in peace. Outlived a cancer center here in Boca. Lived to see both my dghtrs marry. Lived to see not 1 but 5 grandkids come into this world and be a part of their lives!

I don't think, Delaney -- such a beautiful name -- that you have an expiration date stamped on your foot!

See yourself far, far into the future. Believe with every day that you are going to be healthy and well. That you will survive. And thrive. Talk to your body all day. Tell it -- cause it is programmed to listen to your commands -- HEALTHY AND WELL. NO MORE CANCER. That's what I do to this day.

Look for the good signs. The love and support of your beloved family should keep you buoyed. Reach for outstanding results, for them, and of course, for yourself. You are a blessed Soul!

Sending you Love and Light,
Andi

Re: Is this aa bad sign?
 

andi: I am gonna bookmark your post. What a gift of compassion and hope you are. Thanks from me, Nora

Stay strong, brave and determined
 

I too recently came across an old picture of myself, guess when I was on Dexamethazone ('98) -- taken the day before and the day of treatment. I could not believe how round my face was. And that was just a little bit of steroid, ev 3 wks.

On Taxotere I lost 33 lbs which just made me look all the better. Wig in place, I never had a bad hair day. People were complimenting my hair all the time. (I'd have mischievous images of me reaching up and plucking my wig off with two fingers and handing it to the one admiring my hair. Here, take it...) I lost the weight because I ate nothing. I should have lost more not eating for 8 mnths. Even after the mastectomy, I still weighed the same?! What gives?!

For 8 mnths I had constant queasiness and that metallic taste along with unstoppable bathroom drama from the other end. I forced myself to eat a handful of nuts and drink water, drink, drink, drink. Keep hydrated. This is seriously important. Your body needs to be hydrated. Have you ever seen a person who is dehydrated? Life threateningly ill...

But the puffy moon face and weight issues all come with the territory. Those who are stick thin in the chemo room can barely walk. That's not a good thing. In case of a famine, I am in good stead. Plenty of fat to live off. (Though I have recently lost 15 lbs w/my new holistic doc here.) Still, the days of skinny for me are a memory. A thing I took for granted, eating most anything I wanted. But I feel fabulous and look damn good for an old lady/4th stage cancer survivor.

So -- hang tough. I tell myself all the time -- STAY STRONG, BRAVE AND DETERMINED. At first, I didn't believe the first two so much, but I was certain of my tenacity. I come from a long line of stubbornness. Turns out that's a good thing. (And I found out that I am a lot stronger and braver than I ever imagined I was.) SO ARE WE ALL! I promise you. Dig for it. It's there... When you keep indoctrinating that mantra into your psyche, at the very least think of it as a goal!

Let your Spirit guide you. And stop listening to the voice in your head.



Andi

Re: Is this aa bad sign?
 

Andi, wonderful inspirational post as always:)

Coolbreeze sorry for my slow response and I can see now why you thought that, I just took in the steroid/weight factor at the time I read it !:)

Helen hang in there and listen to your family as there's time to lose the weight when you're feeling better and hope Andi's post helped you:)