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Going through some trying things right now

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

I have been reading the posts but not saying anything for awhile now.  I wish we could hear something from TW.  I have him on my mind and thinking about him.  I have not seen anything either on Paula, has anyone else?    My cancer scares just want quit.  I had RCC in 2012  scans were good in march 2013.   July diagnosed with colon cancer, but was fortunate it had not spread.   Was finally sent to oncologist and it seems my cancer cells are not dying off.  Have had genetic testing done , they  do think I have a syndrome called Lynch syndrome and if I have this then I can have multiple cancers just show up anywhere and especially in gastric system and to the brain.  Have been in a lot of pain in my hip,  Had a PET scan done and cancer cells show up in my hip.  On pretty strong pain meds right now.  Will have to wait to see what PET shows in 3 months again.  Since  also  I have atrial fib that has worsened i  will be having heart surgery next wed  nov 6. I ask for your thoughts and prayers during all this.  I actually feel like a hypochondriac. LOL.  If i do have lynch syndrome they want to remove my colon and a lot of chemo.  So i just hope all this does not come to fruition.   Thanks

icemantoo's picture
icemantoo
Posts: 1559
Joined: Jan 2010

Brea,

I hope all goes well. My mother is a 40 year survivor of Colon Cancer so if it is caught early it can be cured. Hopefully the heart surgery will go well and the remaining issues can be resolved before anything gets serious.

 

Icemantoo

angec's picture
angec
Posts: 622
Joined: Mar 2012

Brea, so sorry to hear you are going through so much!  You might not have Lynch syndrome, let's see when the test comes back.  What stage was the colon cancer?   If they find that you don't have Lynch syndrome perhaps after the surgery they will just start you on meds like Votrient or whatever suits you. You are not on meds now are you?  As for the heart and Afib, are they going to put you in to restart the heart? What type of surgery are they doing?  

Take one day at a time Brea, don't worry in advance. First thing is to find out the results which shouldn't take long, then go from there.  I will be adding  you in my prayers tonight. You are not a hypochondriac, you have some issues going on but they can be managed. Please keep us updated.  xxoo  

Oh, for the cancer in the bones will they give you the cancer meds for the bones? (the name escapes me again, someone chime in lol).  That would be something to think about once the results come in.  Is it zometa and there is one more.

We have not heard from Paula in a while, but she was one to sit back and take a break for a while and not read or post.

NanoSecond's picture
NanoSecond
Posts: 531
Joined: Oct 2012

Angec (and Brea).  The two drugs are either Xgeva (Denosumab) or Zometa (Zoledronic Acid).  It is very important that one of these drugs be taken in combination with any TKI (such as Sutent, Votrient, etc.) otherwise the TKI will have little effect on the bone mets.

Of the two, Xgeva is the better choice (although it is more expensive).  It is better because it does not stress the kidney in any fashion (whereas Zometa can and therefore requires constant monitoring of kidney function).  Xgeva is easier to take as well - it is given as a shot in your arm once a month.  Finally, Xgeva is thought to initially work faster than Zometa.

There may be other ancillary (good) effects from taking either one of these drugs insofar as they may slow or even prevent further spread of the cancer.

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

Thanks all for your responses,  its good to have this group on here for encouragement and support.   Angec  colon cancer was stage 1 and no spread , was just abutting the tissue to spread.  I have regular scopes every 3 years due to adenoma polyps every time i am scoped.  This time I was scoped 4 months earlier than 3 years and had 6 polyps and 1 was cancer adenocarcinoma other 5 was adenomas.  The concern of oncologist is this is 3 primary cancers.  The genetic testing takes 3-4 months to ger results from test.  I had bld drawn sept  11  so will b in dec or jan.  I will be put to sleep next wed and have cardiac ablations to heart.  Doc said 2 hour surgery and stay overnight if all is well i can come home thur afternoon.  I dont believe I will have any problems with this.  May get off 2 heart drugs in 3 months.  YAY!!!!  I ihave a very positive attitude about all that is going on with me.  I have good docs and close supervision and you people on here.  What more could I ask for ?????   Thanks to all.  

I am alive
Posts: 221
Joined: Jul 2012

Brea,

  My father-in-law had colon cancer almost30 years ago. Spent a month in the hospital because of an infection or some other complication, but never looked back. He's 85 now. So you just don't know how things will shake out. Do you have family around you or friends who aRe supportive? I hate to think of you having to deal with all this worry by yourself. Take a deep breath and try not to dwell on what might be. Just deal with what you know. Heart surgery coming up fast - what exactly is it? And how long does the doc expect you to stay in the hospital? What's his/her estimate on recovery time? If it takes care of the atrial fib that'll be a relief! One foot in front of the other. One worry at a time. Please keep us posted on your recovery. Good luck with the surgery next week!

foxhd's picture
foxhd
Posts: 1923
Joined: Oct 2011

Unfortunate circumstances for you brea. I'm happy that you have close medical observation monitoring your status. I understand your worries. Stay strong.

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

I have great family support and my husband is just wonderful to me.  I have been so blessed in my life.  I have my church family also.  Recovery should be about a month  doc said i would feel tightness in my chest for awhile from where all the tissue around my heart will be lasered.  Doc said my stroke risk is 5/10 right now and we need to get this fixed.  My father passed away at 66 from atrial fib.  He threw a clot from heart to brain stem and had a massive stroke.  So doc just wants me to do this before something else pops up.  Thanks for ur concern..

Jojo61's picture
Jojo61
Posts: 383
Joined: Oct 2013

Brea,

My thoughts and prayers are with you. Take care!

 

twinthings's picture
twinthings
Posts: 403
Joined: Jun 2013

Lifting you in prayer, Brea. 

TillieSOK's picture
TillieSOK
Posts: 237
Joined: Jul 2013

Hang in there, Brea.  It's rough now, but it will get better.  You are in my thoughts and prayers.  Keep us updated.

SammySue
Posts: 7
Joined: Nov 2013

Good luck Brea.  My prayers are with you

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

Had heart surgery nov 6  was to be 2 hour surgery , turned into 4 hours.  Took care of atrial fib and then still had another abnormal heart rythem too.   2 more hours to correct atrial flutter.  But am so glad they found it all at one time.  I was asleep so I didnt know how long I  was out.  Came home next day from hospital and got bronchitis and have coughed like crazy,   been to er last sun morn and doc office on mon and tues getting shots of antibiotics and steroids.  Feeling some better today.  Will take 3 months for heart to heal and I should be ok.  I have another pet scan coming up in 3 months to see what is going on in hip  to see if cancer cells light up brighter.  Looking forward to the holidays and time with family.  I take it one step at a time and try to enjoy each day however I can do it.  Still ask for your thoughts and prayers as I travel on this journey.  Thanks so much for your encouuragement and good thoughts.     Sue

I am alive
Posts: 221
Joined: Jul 2012

Sue, thanks for letting us know how the heart surgery went. Well, looks like you have three long months to relax, recuperate and not worry about anything other than having a pleasant day. I like to think of the time between scans as a "vacation" - why mar a vacation with worry and fear? There will be plenty of time for that  the day or two before the scan, and the days after it whiile you wait for the results. I try to limit "crazy time" as much as possible - my way of coping with the uncertainty that can engulf us, if we let it. It's great that your three month vacation will see you through the holidays and into the New Year. Sweet. My next scans are right before Christmas, which will add stress :( oh well. I've been at this for a while, so I'll manage. Cheers to you! Enjoy your holiday. I'll be thinking about you.

I am alive
Posts: 221
Joined: Jul 2012

Sue, thanks for letting us know how the heart surgery went. Well, looks like you have three long months to relax, recuperate and not worry about anything other than having a pleasant day. I like to think of the time between scans as a "vacation" - why mar a vacation with worry and fear? There will be plenty of time for that  the day or two before the scan, and the days after it whiile you wait for the results. I try to limit "crazy time" as much as possible - my way of coping with the uncertainty that can engulf us, if we let it. It's great that your three month vacation will see you through the holidays and into the New Year. Sweet. My next scans are right before Christmas, which will add stress :( oh well. I've been at this for a while, so I'll manage. Cheers to you! Enjoy your holiday. I'll be thinking about you.

Jojo61's picture
Jojo61
Posts: 383
Joined: Oct 2013

Hi Brea,

Glad you are doing better!

Enjoy your down time.....keeping you in my prayers.

 

Jojo

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