Pain and Herceptin (again)

Heart Sutra · 06-25-2007, 10:41 AM

Hi Andi,

I have a power port and most if not all techs refuse to use it for contrast injections. Even at my onc. the nurses will only do a draw from the port if I'm having treatment at the same time. My onc. feels the more they access the port the higher risk of infection.

My question to them is why the power port then. If no one will use it for contrast/draw why was it suggested I get it instead of a regular port.

The power port is much bigger and sticks up much higher than a reg. port. I'm a fitness trainer (before all this "lovely" cancer) and am very muscular in my chest area, thus making the port very noticeable.

It was suggested by my onc. to get the power port so I didn't have to go through the pain of numerous sticks as my veins roll and are not as accessible in the arm they can use (figures).

So, even with the newest technology available, it seems to follow suit, that all involved need to catch up to be able to use it. In turn this dwindles down to many sticks and many black and blues.

Oh well...if that's the worst of it, I'll take it!!!

Kathy,

I was on Taxol and experienced terrible bone pain. The pain was in my feet, hips, shoulders and ribs. I would have pain for up to 6 days after treatment. So much so I would take Vicoden every 4-6 hrs. or I wouldn't be able to walk. My onc. let me go through 2 treatments of that and then changed the remainder 2 treatments to Taxatere which was a breeze in comparison.

I'm now experiencing pain from the Herceptin in my heels, hips and shoulders.

Will talk to my onc. about it tomorrow as I have a treatment. As suggested by the ladies here, they can reconstitute it with saline and that helped them.

Isn't information a wonderful tool!!!

Thanks for being here, Sue

Andrea Barnett Budin · 06-25-2007, 11:31 AM

So interesting Sue. I'm assuming you take Decadron w/infusion, that's supposed to help. On Taxotere from Sept'98 through to the end of May '99 I had deep muscle pain in my arms and legs. I shuffled when I walked. Needed to sit if standing for a few minutes. Needed to sit to brush my teeth. Needed to lean if standing and waiting (for Paul to get the car and pick me up). Would get light-headed, very shaky. The soles of my feet felt like I had been walking through fire. The arms and legs thing lasted for yrs after stopping Taxotere. My eyes leaked incessantly. I carried a tissue in my clutched hand to mop up at all times, even trying to eat. I kept a ziploc in my bag to collect my soaking wet tissues for disposal. I carried water w/me at all times. Drank 10 glasses of water a day, to help flush out the toxins. Mostly scared Sept'98-Dec'98. Then the turnaround. I read a bk written to help save my life, I swear. ONE DAY MY SOUL JUST OPENED UP. 3 pg chapters, all I could force myself to concentrate on at a time, followed by 3 pgs to "journal" your thoughts. From this came my awakening, my PRAYER FOR SURVIVAL, which makes others cry a bit when reading but they also find it very inspirational. It still inspires me when I reread it.

Kept the book and a pen by the toilet, where I basically lived, w/diarrhea, which continued for 7 yrs.

Any one needing my remedies for any of the above, I'd be glad to share. Pray you didn't have such an adverse reaction w/yr chemos. Others tk the same chemo and got up and went to work. I went home and got in to bed. Lived on pain killers. Crawled up the stairs. Short of breath (pleural effusion, which dissipated within the following year). Small peri cardial effusion which remains still and probably will not go away, they now tell me. Isn't interfering with EF.

THE GOOD NEWS IS -- TAXOTERE AND HERCEPTIN ANNIHILATED MY MULTIPLE LIVER METS. Staying on Herceptin has kept me NED since '99. Worth the pain. Life is so beautiful.

If one person has done it -- YOU can do it too. Meditate, breathe, take supplements, adopt strong positive attitude borne of belief in your power to heal yourself (commanding your body) and calling wellness to you with the power of the energy of your thoughts. Put it all together, add lots of love -- and you can become a miracle! With love to all my Sister Souls... ANDI

PS I never heard of a power port before today. My onc on Long Island does finger sticks for CBC etc. I used to find it annoying, that tiny momentary prick I thougt of as unnecessary. Now I resee through your eyes -- use port as infrequently and carefully as possible. Careful I knew, but didn't see beyond the convenience of having it and a chemo nurse to access it properly. 2 saline flushes + heplock. I always check. Had this port since '98. ('95 port came out end of '96.) Little did I know HER2+ gene was lurking... Now, it's "under control". A chronic condition that can be controlled. That's how I see that.

StephN · 06-25-2007, 11:39 AM

Hi Sue -
I had a lot of what I termed "holdover pain" once I finished my chemos and went on Herceptin alone. I had Taxol with Navelbine AND Herceptin for mets the last go-round. I was treated for a sort of arthritic condition and then that morphed into more of a connective tissue problem. So, I had a long couple of years to recover from all that. The weakness in my knees and legs was the worst - but I did go to light workouts and bring myself back slowly.

Forgot to mention that I also went on Zometa to strengthen bones after getting off the chemos. So, I would get the Zometa every 3 weeks with my herceptin. The Zometa may have exacerbated the pain - but in any case it is not my experience that the pains from the chemos go away at the drop of a hat when the chemos are over.