Progression

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 said:

Judy

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

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 said:

Thank you. I have had

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

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.