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Progression

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

Well I'm at my oncologist' office, right now getting my infusion. I awoke this a.m. with pain below my ribs (left side thi time). He thinks it's progression. It could be from missing treatment the weekend of my surgery, not having Avastin for almost two months, or my body building a tolerance to the chemo. I am feeling quite devastated right now. I will have a PET early next week. HIs hope is to get the Avastin back in my system and working. I had it two weeks ago. Time will tell; right now I'm a little in shock and very sad...

Judy

jen2012
Posts: 1186
Joined: Aug 2012

I'm sorry Judy, but try not to panic or be sad until you really know what's going on.    I'll be thinking of you.

kennyt's picture
kennyt
Posts: 109
Joined: Jun 2013

I'll keep my fingers crossed for you.

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

And I can't get a PET scan until next Thursday...results Friday from his nurse practitioner, as my oncologist is going on vacation. 

annalexandria's picture
annalexandria
Posts: 2181
Joined: Oct 2011

I so hope your doctor is wrong.  It seems like a sudden pain like that could be from something else.  Since you had surgery recently, couldn't it be possible that it's related to that, even if it is on the other side?  I know it's almost impossible, but try not to worry until you get the PET scan done.  This is the time when I would be digging into the anti-anxiety meds to help reduce the fear a little bit while you wait.

Sending hugs and strength your way~AA

hippiechicks
Posts: 302
Joined: Sep 2012

I agree with all of the above .. please try to wait for the PET results!! Could it just maybe be pain from scar tissue? I have terrible pain with scar tissue in random places in my abdomen.  I wish you the best!! Thoughts with you!

 

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

He thinks my liver tumors have grown and they are pushing on my diaphragm. That is why I am getting this sharp pain and shortness of breath. And, my CEA was 25 :(

 

Chelsea71
Posts: 1167
Joined: Sep 2012

Sorry to hear this Judy.  Steve stopped chemo briefly and within three weeks he developed symptoms.  Alp and other liver numbers went sky high.  The liver can get out of control fast.  Hopefully now that your back on chemo things will get under control.  You also have numerous other chemo options left.  Try not to worry.  One day at a time.  Keep us posted.  Will be thinking of you.

 

chelsea

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

Thank you Chelsea. The doctor is very optomistic, and actually used the word "promise" that he would get back to where we were, and beyond. He was very good, came out while Jim and I were checking out, gave me a pep talk to not give up. So, I'm gonna keep going. And try to be positive. This is Folfox weekend number 16 and it seems to be going fine. I had morphine for the pain under my ribs; it felt so good to breath deep and not have that pain!

Cathleen Mary
Posts: 524
Joined: May 2011

Judy,

I am sorry that you have yet one more thing to deal with....even if only the waiting. Patience was never my gift so I understand how stressful this can be. Prayers for strength and a good outcome.  Please know I, and many others, wait with you.

Cathleen Mary

 

Annabelle41415's picture
Annabelle41415
Posts: 4197
Joined: Feb 2009

It's so hard to be going through all you are.  I'm hoping that the new scan doesn't prove anything is there.  Glad you can get in next week, but even that seems like an eternity away.  When you have to wait, the wait is always so long.  Prayers for a good outcome.

Kim

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

When I was worried about being off of chemo for 4 weeks waiting for surgery my liver surgeon told me not to worry, the chemo would still be shrinking those little devils for 5 weeks, so don't blame yourself for missing a lone chemo.  It might be you're chemo isn't working anymore, I was scared when I discovered the Oxi, Xeloda, Avastin which had worked so well wasn't working anymore, but the Onc switched chemo and those suckers started shrinking right away, so please don't worry too much okay?

But it might be just as easy as getting the avastin back in your system too.

the wait for the scan and then the results are the hardest aren't they?  I'm so sorry you have to wait so long.  

I'm hoping for a pulled muscle for you.  Thinking of you and fingers and toes crossed that the PET won't show progression.

Winter Marie

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

It's bizaare actually. I took my pain meds after supper last night. It felt so nice to be able to take deep breaths and not have any pain. That right there helped with my spirits a bit. I slept all night, woke up and still didn't have that pain. As I got moving around I started to ache, so I took pain med. I am hoping, too, Winter, that the Avastin will start kicking in (that's what my ocologist said two weeks ago-and why he didn't want to scan until after a few rounds of it; this pain, however, is resulting in an earlier scan than planned).

I can't thank you guys enough to know what this forum has done for me. People who have gone thru the same things with same treatments, people who have other treatments that worked (I write them in my notebook so I have them handy) thank you all!

Hugs to each and every one of you,

Judy

annalexandria's picture
annalexandria
Posts: 2181
Joined: Oct 2011

Personally I feel that with everything else we have to deal as cancer folk, that we should at least always have access to effective pain management.  Living with daily pain is awful!

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

Thank you, Winter, about your comment about guilt. My colostomy reversal was elective, in that I could have kept "Oscar" for as long as I wanted, I guess. But, I would have had to wait until next summer, as recovery is quite long with the procedure. I was feeling some guilt, but not so much now.

Thank you!!!

Judy

janderson1964
Posts: 1525
Joined: Oct 2011

Dont blame yourself. You are doing everything you can. We all have to learn to be good to ourselves. We deserve with ALL that we have to endure.

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

Thank you. I have had horrible pain with deep breathing. My doctor thinks liver mets had gotten bigger, so my liver is pressing on my diaphragm. Just really bummed out because I was doing so well before surgery. And I'm in panic mode because I have to start getting ready for school in a couple of weeks.

Judy

Chelsea71
Posts: 1167
Joined: Sep 2012

You still have a lot of options Judy.  You may want to talk to a surgeon or ask your oncologist about targeting the liver directly.  It sounds like it has all been going so well (systemic chemo) that your onc didn't want to make any changes but instead continue on for as long as the chemo was doing the job.  If Folfox has stopped working, it might be a good time to discuss TACE or Theraspheres or some other form of intervention.  Then you will still have Folfiri and possibly the EGFR's for down the road.  You are in a good place in that your disease is all contained to the liver.  Sounds like you have a nice, compassionate oncologist.

 

Chelsea

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

Thanks, Chels!

 

renw's picture
renw
Posts: 282
Joined: Jan 2013

If it is from the liver, then I know the pain well. My liver now occupies half of the space where the lung used to be, and when it pushes on the diaphram and other organs it can be very painfull, especially when breathing.

I found 2 things that help, a hot bath and phoenix tears. The first is temporary, the second I find reduces my liver swelling and mostly eliminates the pain for up to 24 hours. Go figure.

fatbob2010's picture
fatbob2010
Posts: 367
Joined: May 2012

Hi Judy,

Sometimes we end up just tying a knot and hanaging on for dear life. 

You have, what seems like a care team and family that both care for you.

New medications are being developed and the tried and true medications are being put to new use.

Hang on tight,

Art

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

:)

 

lp1964's picture
lp1964
Posts: 839
Joined: Jun 2013

What I try to keep in mind all the time that having a loving partner, friends, family and caring professionals makes it all worthwhile.

When I was healthy, I was in a bad marriage for many years and as I remember I was lot more miserable then even though I have this terrible illness.

Laz

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Your symptoms sound very similar to what I've been feeling the past few months...

My 4th cancer is back in liver and we think lungs....the pain came on swiftly and I wasn't expecting it.  But trying to breathe in much at all (not even deeply) had me hurting badly.  One doc thinks its the liver...I think both...I get some painful stabs in my liver that are reminescent of liver pain I had over 5-years ago.

And the lung pain mimics what I went through with my last recurrence...same type of symptoms are presented.

All I had was Tramado, which isn't very strong...one of my doctors would not give me anything...in fact, I've most will not veer off the standard Vicodin or Darvocet, Percocet etc....

This new onc I went to I told him about the pain and I had mentioned I need something stronger....like perhaps a Fentanyl patch...he ended up prescribing Dilaudid 2mg.....and it has helped knock the rough edges off where otherwise by now I'd be screaming.

Problem is keeping it in your system steadily....I'm only doing 2 a day about 8-10 hours a part....not great, but I don't want to ramp up too fast.

I'm also trying a Fentanyl patch (new doc rxd that) and found that I only need to take about one Dilaudid a day....and that's usually at day's end before bed...so mostly the patch and nothing else.....the slow release 25 mcg is a blessing as it keeps a steady supply going.

And as you said, I can wake up and not be crippled like I was getting.....I've only tried one patch....but without it, it was taking me close to 2 hours a day for the Dilaudid to get in my system to work...and then that stopped being effective, so I had to double the early dose just to get a jump on it.

Fentanyl is dangerous though as is any opoid.....and I don't want to be dependent on anything but the body ramps up quickly....and then our only recourse is to increase dosage....which increases our risks.....Fentanyl is hard on breathing...combined with Dilaudid....you get the idea.

But, right now with my picture still unfolding and no plan in place, I've had to do something....I couldn't stand, sit, or even lay down at night without pain that brings tears to your eyes.

And it happened so quickly....I'm not even in the fight again yet and already fighting uphill...

Hopefully, we'll know more soon but until then I'm just going slow.....don't want my body to get too accustomed to all of this....we all know after a long time on this....the only way Up - is Down.

And that concerns me...

But, it's nice to breathe easier too and not be in constant agony.

Cancer is such an ambiguous disease....

Take care, Judy...and hoping your scan gives you clearer answers than all the tests I've done recently:)

 

mom_2_3's picture
mom_2_3
Posts: 937
Joined: Nov 2008

Judy,

I am happy to hear that you are able to get the pain under control and I am hoping that you get good news on Friday regarding your scan.  You did mention that you wrote down other treatments that have worked for other patients.  So, I wanted to mention (although I am sure you have read about it already but just in case...) HAI (hepatic arterial infusion) therapy.  Basically it's like a hockey puck that gets implanted in your abdomen and works just like a powerport.  The chemo needle is inserted into the port through the skin and the pump is filled with chemo which is then routed directly into your hepatic artery.  The pump circulates the chemo in your liver for 2 weeks and is then flushed with saline and steroids for a couple of weeks until the next treatment.  It allows for concentrated chemo to perfuse the liver.  You mentioned that your liver mets were shrinking from chemo but I am not sure I saw anywhere that your oncologist has recommended surgical removal of the mets.  That's something to push for.  If your oncologist says you're not operable, get a second opinion from a different practice, preferably an NCI hospital.  I go to Memorial Sloan Kettering in NYC but NCI facilities are all over the United States.  The HAI pump, however, is done primarily in NYC at MSK.

If you would like further information about the pump refer to http://www.mskcc.org/videos/treating-liver-metastases-hepatic-arterial-infusion-therapy.  That's my doctor and she is amazing.  If you have any questions, please PM me or post here.

All the best,

Amy

angelsbaby's picture
angelsbaby
Posts: 1154
Joined: May 2008

Had that implanted and it sure helped him with his pain  all i know is that he was using the booster alot and i am so thankful that he could do that when he needed it

 

michelle

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

I have heard about the Hai pump, but the problem is I live in Central Maine :(

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

Yahoooo, some of the liver tumors have gotten bigger, but there was no progression to anywhere else. I was sure, with the pain and being off the Avastin for surgery for 8 weeks, that it had spread. Now, kick in Avastin (I've had two tx with Avastin) and knock those buggers back...

 

annalexandria's picture
annalexandria
Posts: 2181
Joined: Oct 2011

I know the Avastin has made a huge difference for many people (like a life-saving difference), so I'm hopeful that it will do the same for you.  Big hugs!  AA

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

Thank you, AA. I was so fearful, because the pain (upper right side into the left, under the ribs) was so bad when I took a deep breath in, that it had spread. I could understand the liver tumors getting larger, due to not having Avastin for eight weeks. Now I'm ready for it to kick in gear again, as it was effective before!

Judy

herdizziness's picture
herdizziness
Posts: 3388
Joined: Apr 2010

Love that it's good news!!! Now Avastin do your job!!

Winter Marie

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