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PET Scan results **UPDATED**

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I had my PET on Friday and got the results today.  The good news is that the tumor in my right lung is gone.  The bad news is that instead of one medium size and shrinking tumor in the upper lobe of the liver, there are now two very large tumors that occupy from 1/3 to 1/2 of the lobe.  The onc says surgery is out because the anti-rejection drugs can cause tumors elsewhere to bloom.  I told him that I'd talked with several people who have had liver resections and replacements but he still didn't think it was an option.  

Considering the tumor growth, it appears that Zaltrap isn't working for me, so he's putting me back on Avastin and Oxy in my next session.  I have to be honest here: I'm at the point now that I worry I won't see 2014, or even my birthday in May.

 

God Bless to all

 

Ray/Doc

 

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

So sorry that the new meds are taking.  Just don't have nothing to offer besides another opinion and prayers.  Maybe the new treatment will help. Wishing the best for you.  Prayers on the way.

Kim

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

   You are going to fight this friend just like you did all the other obsticals that you have faced.. Please don't give up .. you have inspired me so often here.. and I don't know what I'd have done with out knowing you. All my love and <<HUGS>> Your other Jersey Girl.. Donna  

Lovekitties's picture
Lovekitties
Posts: 2992
Joined: Jan 2010

I hope that you can explore the surgery option further with another doctor.  I  have to think there is one out there who will see it differently.

As you circle the wagons and bring in reinforcements, don't give up finishing the editing on that book, planning one heck of a birthday bash and contimplating a blow out date for next New Year's eve!

May God bring you the best medical solution for improvement all round.

Hugs and love,

Miss Kitty

janderson1964's picture
janderson1964
Posts: 1824
Joined: Oct 2011

Get a second and third opinion on the liver surgery and get it from a surgeon not an oncologist. I have had 3 liber surgeries. They took 65% of my liver last year.

jen2012
Posts: 1251
Joined: Aug 2012

Sending prayers and best wishes. I hope you see another doctor and get better options.

Chelsea71
Posts: 1170
Joined: Sep 2012

Talk to a surgeon. What your onc told you is only his/her opinion. You could get a completely different opinion from another person. Please do not settle for this. Great about the lung tumor. Keep fighting.

Chelsea

tanstaafl's picture
tanstaafl
Posts: 1013
Joined: Oct 2010

The antirejection drugs are for transplants, you just want the old one trimmed.   When I was looking for surgeons for my wife's para aortic lymph nodes [cluster as it turned out], the medical oncologists badgered me to do their [expensive, ugly, hopeless] version of chemo instead, despite freely admiting it would not be long term successful.   

The unobtainable surgery got her to long term, and our mild immunochemo is still working.   Got to find that magic surgeon that has a good track record with your kind of operation. 

 

annalexandria's picture
annalexandria
Posts: 2320
Joined: Oct 2011

I've seen other cases where up to 80% of the liver was removed, so I'm not sure that your doctor is totally correct in his opinion.  My experience has been that our oncologists don't always know what is and is not possible in the surgical realm.   The other thing I would wonder about is the procedure in which chemo is pumped directly into the liver.  Again, I've read of people on these forums who had that done to shrink the tumors, and then followed it up with surgery.  Givent that the lung tumor is gone, I don't think I would accept this as the final word...it just seems like there may be more that can be done!  Ann Alexandria

Dyanclark's picture
Dyanclark
Posts: 272
Joined: Apr 2012

You are an inspiration, you keep fighting to stay with us.  Keep us informed we all love you. 

Our neighbor had 3/4 of his liver removed 8 years ago due to cancer.  He was also colon cancer.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I'm going to consult the surgeons down in salt Lake City at the University of Utah as well as the local doc who took out my appendix and gall bladder in October.  As far as getting chemo pumped right into the liver tumors, my onc and I discussed it a few months ago and he checked.  It's not available in this state.  I have looked into the Cancer Treatment Centers of America, but I'd have to relocate to another state and even then, they're not contracted with my insurance company.

coloCan
Posts: 1871
Joined: Oct 2009

patientresource.com

 

(don't know how thorough listings are)

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Oncologists and surgeons see cancer somewhat differently. It is certainly worth it to talk to a skilled surgeon and get her advice. I know it's hard to stay postive when you've had so many curve balls thrown your way, but it's in you to keep fighting.

Talk to a good surgeon.

Hugs from California~

Tommycat

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Yo have had lots of good solid advice...glad to see that you are getting 2nd & 3rd opinions!   You have to fight...don't get discouraged.

 

Alex

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I'm sure things will become better for you from now!
Hugs!

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

stay strong & do not give up! glad you will get another opinion.

praying for you

hugs from indiana

judy

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

love your new picture!

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Ray,

I am so sorry to hear of this development. I do sincerely hope you go for several other opinions as the others have suggested. If the cancer is only in your liver, maybe liver targeted therapy would be a good option - hepatic artery infusion or SIR spheres or Theraspheres. I wish the best for you and hope things start looking up. Hang in there.

Sandy

marbleotis's picture
marbleotis
Posts: 519
Joined: Mar 2012

Ray/Doc,

Do not be discouraged by the news, just push for a second and third opinion.  The CCTA may be able to work with you and what your insurance can pay.  Talk to their financial counselor or social worker.  A friend of mine had stage 4 prostrate to the liver and was given 1 year.  He got a second opinion at Duke and now has tremendous shrinkage in the liver to where they can resect.  Do not waiver, do not give in.  We are always here for you. Don't get mad, get even with those tumors!  Please keep us posted. 

 

LivinginNH's picture
LivinginNH
Posts: 1337
Joined: Apr 2010

I hate this dang disease...   As the others have said, try not to get discouraged, and keep fighting...

Warm wishes for better days ahead,

Cyn

tootsie1's picture
tootsie1
Posts: 5016
Joined: Feb 2008

Praying you can find a doctor that can offer you some hope!

 

*hugs*

Gail

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

I'll just be chiming in repeating the others. Don't give up and check with other surgeons, over two years ago I was turned down by two cancer boards and things were bleak, but my onc and I persevered and had my surgery December of 2010, and am still in the fight.

Keep looking, keep fighting good sir!!

Winter Marie

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

You get another opinion.
My liver reoccurence is in same place they dang well removed first in April. Got a second opinion from a new local surgical oncologist our hospital recruited from Loyola this week (ater having my surprise brain met removed before Christmas) so now we do radiation to one area and next chemo for the liver. She thought we may be able to do RFA after this, scan, surgery? We will see. I have been scared out of my wits this week and trying be hopeful. They say my cancer is behaving very differently since the met found a journey to my brain!
Totally understand how you are feeling but its not you to accept this.
Your posts have helped so many. Please seek a second opinion and get moving on fighting this liver thing.
I am with you along the way my friend!

LivinginNH's picture
LivinginNH
Posts: 1337
Joined: Apr 2010

Up

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I finally got my new CEA this afternoon and it had a slight increase to 1982.4 which is actually sort of good.  It means that the cancer is slowing and hopefully next time there will be a decrease.  I also have a referal for a surgeon in the University of Utah to see about cutting out the tumors in my liver.  I'll also see a surgeon closer to home about it as well as a possible cut and stretch of the anal muscles which feels like it's going into spasm again.  I've been having a lot of pain down there recently and it's feeling very similar to what happened two years ago.

 

Hugs to all and thanks for the prayers and warm words

 

Ray/Doc

steved
Posts: 836
Joined: Apr 2004

Both the plan and you sound more positive. It is amazing what a few days digestion and review of results does.

 

Steve

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Getting the slow down in the growth was a big boost to the spirits.  We've been having a weather inversion here with a lot of pollution, cloudy skies and pretty foggy (not like you get there in the UK, but bad for here) and it was really a good match for how I was feeling before getting the latest CEA.

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Good!!! Keep going.....positive energy and thoughts coming your way!

Judy

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

Glad that the levels are leveling off.  Hope that all goes with the appointments for surgery.  Maybe they can give you some type of sypository for the pain you are having.  Praying for you.

Kim

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

The last thing I want to do is put anything up the sore spot.  It hurts bad enough when I wipe after a BM.  This happened before and the surgeon had to cut and stretch the muscle.  I'm pretty sure it's the same thing that happened then but there's no way I'm going to let it get as bad as it was before.  By the time I finally went to see the doc about it then, going to the bathroom was one of the worst pains I've ever felt.

Annabelle41415's picture
Annabelle41415
Posts: 4399
Joined: Feb 2009

I've had that terrible pain with the anus.  I'd cry going to the bathroom and just wish it wouldn't happen, but there is a small steroid that you can insert that might help the pain.  Please ask your doctor.  Going to the bathroom or even sitting was the worst thing ever for me and no one knows how bad it feels.  I'd stand up when going out to eat for 24 months due to radiation damage and the tumor.  Don't let it get bad, you don't need that pain.  I've been there, wish someone would have helped me back then too.  Just take my suggestions to heart and ask your doctor.  You shouldn't be in that much pain - but then again I'm feeling your pain from before too.  Thinking of you.

Kim

wolfen's picture
wolfen
Posts: 1206
Joined: Apr 2009

So sorry to hear of all your recent setbacks, and hope that you pain can be eradicated soon.

Glad that someone at University of Utah may be able to do the surgery. If that doesn't work out, please remember that we have MDA Anderson and Mayo in the Phoenix Metro area, as well as CCTA. I don't know if you're north or south of Salt Lake, but I saw a couple of organizations online that will actually fly cancer patients to & from treatment.

Bets Of Luck.

Luv,

Wolfen

Chelsea71
Posts: 1170
Joined: Sep 2012

Ray, it's good to hear you sounding positive again. Hope it continues. Keep us updated.

Best of luck,

Chelsea

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I know that American Cancer Society will pay up to $10,000 a year to transport and house patients and a caregiver for out of state treatment.  If I were to go to Phoenix, I have a lady friend who will let me stay with her, so that housing issue is not a problem.  However, I'd rather go to Philadelphia.  I would need housing there and the thought of a 6 hour plane ride is rather daunting at the moment, but I've heard that Fox Grove is well worth it.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Thanks, Kim.  Last time it would feel like I was being torn in half while going to the bathroom.  It's not as bad as that right now, but I don't have the strength to endure that again.  I went to the ER about it this evening and will be seeing my onc tomorrow to discuss what to do.  In the meantime, I'm going to be hitting the pain killers pretty hard.

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

glad you got some encouraging news! stay strong!

hugs

judy

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

I met with a surgeon at the University of Utah cancer center today.  He didn't have the images from my latest PET Scan but he has requested them.  Once he's able to see how much of my liver he'd have to take out he'll decide if I can have surgery yet or not.  Most likely we're going to let the new round of Oxy and Avastin do their work and see how tings look in March.

I know that liver surgery is a pretty big deal, can someone give me an idea of about how much down time I can expect to have if they do perform a resection?

 

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

Liver surgery is really different for everyone I think, from what I've heard on here.

I had same day surgery of liver, colon and ureter resections which took over 9 hours and three different surgeons.   I left the hospital 7 days later (a lot leave in 5 or 6 days).  Was walking around the block the next day after getting out (I used a walker, so I could sit and rest) and kept walking all that week.  The 3rd week, I was sweeping, vacuuming, washing and drying clothes, doing the dishes, etc., and had stopped taking pain pills (I think I only took them a couple of days at home, if memory serves right).  For some of us it was pretty easy, for others it was weeks, so hard to tell you.  I do know they said when I go in for the next liver surgery it will take a lot longer to recover, why this is, I don't know.

Wish there was a one fits all, and it was the easy recovery, but unfortunately it doesn't work that way.  Let's keep our fingers crossed you get the surgery and have an easy recovery from it.   Will be hoping to hear you get your liver surgery in March!!! ;)

Winter Marie

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