New, recently diagnosed and a million questions

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Monique
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Re: New, recently diagnosed and a million questions

Postby Monique » Wed Aug 10, 2011 10:36 pm

I I didn't know that steroids were part of the equation. That scares the hell out of me too. For years I've worked at keeping in shape and at a healthy weight. The last time I was on steroids even for a short time, I blew up like a balloon! I've already gotten fat as a pig the past few of months to the point I can't stand looking at myself in the mirror. I'm trying to wrap my head around reversing that trend in the midst of everything else, and now you're telling me that I'm going to have to take pills that are going to make me fatter? This is all just too much to process.

Oh, no. Don't let steroids scare the hell out of you, as they may not be part of your treatment, and even if they are, steroid tolerance differs from person to person. In my case, they weren't beneficial, but I'm certain that others (as did Julie) would argue otherwise. Simply put, see how it goes. I'm sorry if I've worried you - I sincerely didn't mean to.

Warm wishes,
Monique

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Fri Aug 12, 2011 9:14 am

Monique wrote:I[color=#0000FF] Don't let steroids scare the hell out of you, as they may not be part of your treatment, and even if they are, steroid tolerance differs from person to person. I'm sorry if I've worried you - I sincerely didn't mean to.


I know you didn't mean to upset me. I'm just scared in general and ultra sensitive about everything right now. I can't talk to anyone about it face to face without falling apart. I've never been one to cry over every little thing, so it is very embarassing. It has been a frustrating week. Still haven't had any word on the reschedule for my liver biopsy. This is troubling since I am scheduled to start chemo on Tuesday. Had the port placed on Wednesday. When I came out of anesthesia, I just started crying. Wasn't in pain or thinking about anything in particular. It is horrible feeling so out of control of my life. My sister is due to arrive tomorrow and I am hoping that will help. We're planning to just try and have some fun this weekend before having to dive into all the crap next week. Just trying to get by one day at time right now. Thanks for the support.

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BrownBagger
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Re: New, recently diagnosed and a million questions

Postby BrownBagger » Fri Aug 12, 2011 9:31 am

I think we all know what you're going through--what that feels like. It's an odd thing to say, perhaps, but you get used to it after awhile. Reality sets in and you have to decide how you're going to cope with the hand you've been dealt and over which you don't have much control. But you're on the right track--busy weekend coming up and you'll be doing yourself a favor if you can focus on that--wallow in the normality of it all--and try not to worry about what you need to do next week. It'll come, you'll get through it and it probably won't be as bad as you fear or imagine.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
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Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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juliej
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Re: New, recently diagnosed and a million questions

Postby juliej » Fri Aug 12, 2011 5:08 pm

Hi, Susan,

Eric is right. Oddly, it does feel better once you are in treatment. The reality of your diagnosis sets in and you begin to arm yourself for the battle. Right now you're trying to handle the bad news and, at the same time, you're overwhelmed with all the decisions you have to make, doctor's appointments, etc.

I'm glad your sister is arriving tomorrow. I wish I was there to give you a big hug as well. I want you to know I believe that you can do this. Yes, you. You with the broken heart and the fear. You with the shattered dreams. You who know how unspeakably unfair all of this is. You will find strength from a well inside you that is deeper than you ever imagined. You don't have to be strong all the time though. I'm here, we're here, whenever you need advice or support. Remember that.

Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Monique
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Re: New, recently diagnosed and a million questions

Postby Monique » Sat Aug 13, 2011 10:19 pm

I know you didn't mean to upset me. I'm just scared in general and ultra sensitive about everything right now. I can't talk to anyone about it face to face without falling apart. I've never been one to cry over every little thing, so it is very embarassing. It has been a frustrating week. Still haven't had any word on the reschedule for my liver biopsy. This is troubling since I am scheduled to start chemo on Tuesday. Had the port placed on Wednesday. When I came out of anesthesia, I just started crying. Wasn't in pain or thinking about anything in particular. It is horrible feeling so out of control of my life. My sister is due to arrive tomorrow and I am hoping that will help. We're planning to just try and have some fun this weekend before having to dive into all the crap next week. Just trying to get by one day at time right now. Thanks for the support.


I know. I was scared too, and also ultra sensitive. I was the same as you in that my cancer was something that couldn't talk about easily. In fact, many of my friends don't know of my battle. While I admired people that could talk about their cancer freely, I couldn't without bawling. However, what really helped was a good therapist. Some days I'd trudge into his office, sit in a chair, cry for fifty minutes and then fork over my money. This may sound odd, but his office was a "safe" place to cry. And cry I did. Eventually, I stopped crying (at least all of the time), which was a relief. Another thing that helped, as you mentioned, was taking things day-to-day, though it's sometimes hard so soon after diagnosis.

I hope you and your sister are having fun this weekend. Please keep in touch, as this board is a fabulous resource. And Julie's right, you don't have to be strong all of the time.

Best,
Monique

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horizon
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Re: New, recently diagnosed and a million questions

Postby horizon » Thu Aug 18, 2011 6:16 pm

juliej wrote: I've always been the "health nut" among my friends. I exercised, ate a largely vegetarian diet, and still came down with cancer. It's harder for colon cancer patients because so many people assume it must relate to our lifestyle. Those "how to prevent colon cancer" seminars seem to make matters worse (although they are very helpful for those who DO need to change their eating/exercise habits).


This caused me a lot of anger at the beginning of my diagnosis. Here I am doing everything right as the 'health nut' and I'm cursed with this and my unhealthy friends aren't.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

Surroundedbylove
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Re: New, recently diagnosed and a million questions

Postby Surroundedbylove » Fri Aug 19, 2011 8:36 am

Don't worry too much about the steroids causing weight gain. I had the dexamethasone and it didn't cause weight gain for me during chemo. I suspect it is the dosing. They helped me with nausea and probably at the beginning also made sure I didn't have an allergic reaction to the chemo.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
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Terry
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Re: New, recently diagnosed and a million questions

Postby Terry » Fri Aug 19, 2011 9:26 am

First Susan welcome but I'm so so sorry you have to be here:(

Your feelings are normal, I remember well when I found out my cancer had spread to stage IV. It took me a while to get out of the depression. I actually went on Zoloft (antidepressant) for a while to help me to handle it and praise the Lord it worked. You might want to think about going on one, I can only tell what I read but it sounds like you may be a little depressed which isn't unusual since you just received such news.

Look around on here and you'll see people with stage IV that are living normal lives with liver mets, lung mets, ostomies, you name it, we're living our lives. Once you get through this shock and get started on treatment you'll feel like your doing something to take care of the problem. This will all become a part of your life. No, not one that you wanted or asked for but nevertheless part of your life. Keep exercising to help reduce your stress, even during chemo do as much as you can. You have a good chance of NOT losing your hair. What they usual put you on first is called folfox or xelox which is oxilaplatin and 5FU or oxilaplatin and xeloda (5FU and xeloda are the same but xeloda is a pill form), most people do not lose their hair from that. I didn't, most of us did not, a few have but a very very small percentage. So don't worry about that right now, you'll keep your beautiful hair while on that I"m sure. There's another drug regimen called folfori or xeliri and that you have a good chance of losing or at least your hair thinning but that isn't the normal one they use first, if they mention it ask if they can use the folfox so you don't lose it.

Hang in there. Use us to vent and ask questions, it will help and we're more than happy to help you in anyway we can.

Your in my prayers Susan!
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

telftmann
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Re: New, recently diagnosed and a million questions

Postby telftmann » Fri Aug 19, 2011 11:43 am

For what it's worth, here's some of the best advice I received shortly after being diagnosed:

Do not freak yourself out with self-research. Stay off the internet until you've had a couple of quality conversations with your oncologist. Ask your doc about recommended resources.

Be very specific about what you need and even more specific about what you don't need from people. I had a lot of "drama" lovers who insisted on "helping" in ways I found intrusive and annoying. I put together a very direct "do and don't" list pre-surgery. Then I marshalled together a small group of family and friends to guard against these well-intentioned intruders. It worked like a charm, but I had to be really direct (not a problem for me, but might be difficult for others). Fabulous!

Your needs will change as treatment continues. Don't ever be afraid to ask for help (really hard for those of us who are perversely independent, but opening up this way gives you great glimpses of human nature you might have only suspected but never saw until now).

Most people will surprise you in the best ways. Seek them out. Hiding from the world might be more harmful than being transparent.

If you're worried about the hair thing, plan now so you're prepared if and when you need to change up your look. Some of us do experience significant hair loss. Just this week (on my 9th of 12 treatments), I had to don the full scarf, and once it cools down, will be wearing a wig. I invited three close friends to shop for new hair and accessories at the first sign of hair thinning months ago. We turned it into a party, had a blast, and now I'm fully prepared months later to actually wear this stuff. Hair is hair. It will grow back. In the meantime, it just sucks having to lose it. Can't change that, so I need to deal.

The pump is most conspicuous to you. It freaked me out the first couple of times. Now I don't even think about it (except when I take those limited showers). Not one single person has ever asked me about it, nor have I noticed people staring at it. I only wish the bag and strap came in black (they're navy at my cancer center). Black provides more fashion versatility.

If you're active, make working out a priority throughout treatment. You'll figure out your own routines and adjust as you need. But you're right on the mark about exercise being helpful. Just be sure to pay attention to your body. I've had to slow some things down on occasion, but have remained active throughout. It's great mental stimulus to know your body hasn't totally betrayed you!

Focus on what you can do within your prescribed restrictions. Being ordered to take daily naps has turned into a blessing (and I'm the envy of my work colleagues when I have to go home and nap). Figure out what are the things that bring you joy that you can continue to do during treatment. I can't be in crowds so had to give up my season tickets to operas and orchestra concerts. But I derived immense satisfaction by requiring reports from those to whom I gave the tickets -- people who otherwise would not have been able to experience these things. Cancer forced me to share in a meaningful way.

Know your "peeps" and surround yourself with the ones who feed your soul. My warmest, most genuine support has come from my nephews and nieces, ranging in ages from 9 to 25. They are practical, love me no matter what, are funny, direct and consistent in their adoration and care, and specific about their anger. My youngest "kid" recently participated in a triathalon fundraiser for cancer and used me as her motivational story. Raised more money than anyone else. Empowered her. Brought good tears to my eyes.

Let yourself feel whatever you feel. It's a roller coaster and you've earned the right to ride it no matter what direction it takes.

The shock wears off but you'll always remember it.

Make yourself the priority, but don't let others treat you like you're sick. I've had to get angry with people who don't want to"bother" me with the grievances of their life because of what I'm going through. Several times I've had to say, "Don't shut me out just because I have this stupid disease."

Hope this helps.


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