Pain and Herceptin (again)
 

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<HR style="COLOR: #aa8799" SIZE=1><!-- / icon and title --><!-- message -->Hello everyone,
Sue has had a pretty good run being on Herceptin (only) up until now. Her last treatment really brought on a lot of bone pain in the hip area and the heels of her feet.
We read the posts about diluting Herceptin with Sterile water and the results had. We wonder if there are any more testimonies/suggestions.

Sue was getting weekly treatments of Herceptin, and this is the first three week period before she starts treatments every 3rd week. We don't see eye to eye on that decision, but ultimately it is Sue's to make and mine to accept. The concern I have is that her next treatment will necessarily be a heavier dose because of the new schedule, so pain is naturally something we'd like to minimize.



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Kevin & Sue,

While I was on Herceptin I was plagued with bone/joint pain in the lower back and hip area. I tried the every week and every three week schedule eventually settling on the three week schedule. I did however have the Herceptin reconstituted with saline water which helped with the bone/joint pain. I also got a prescription for Lidocaine ointment (not the cream which I did use on my port an half hour before treatment) and would put that on the areas that were painful -- really takes care of the pain. I also requested a bone scan due to the pain and it was clear.
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While on Herceptin since 2001, I've had the weekly, 2 weekly and 3 weekly schedules and really didn't have more (or less) joint pain. I had hip and knee pain mostly, but also experienced heel pain and pain in one of my big toes, like episodes of gout. Also very stiff and sore in the morning, felt like I'd been left out in the rain and rusted up!
I've been off Herceptin for 2 months now after starting Tykerb, and most of the aches and pains are gone except in my left knee which has been arthritic since I was a teenager.

I think you'll find once Sue's year is up, the aches and pains will be melt away.

<3 Lolly

Hi Kevin and Sue

I have just had my 6th weekly herceptin/taxol treatment (6 more to go, then herceptin for the rest of 12 months). In Australia, certainly at my treatment hospital, the herceptin seems to be freshly diluted the day of treatment in a weak saline solution (not a preservative), mixed on site in the hospital pharmacy. I am not sure if it is contributing, but I have had no joint pain other than a couple of days after my first loading dose, when it was mild. Not sure what - if any - conclusions to draw and it's early so I still might be in for some joint pain. But, I offer my experience to add to the info you are collecting.

Best wishes to you both - Belinda

Belinda,

Herceptin must be mixed right before it is going to be used. It can not be mixed and then stored. Herceptin comes with it's own dilutatant that is used to reconstitute it. Just wanted to clear up that Herceptin is always mixed just before use and any unused portion is discarded.

Long Term Herceptin
 

Hi Sue and Kevin and all! You can read my signature for details of my tale. Been on Herceptin since '98! No joint pain. Get Herceptin diluted in 500 ccs saline (vs 250 ccs as recommendation for infustion). Think it helps a lot! Get it over 1/2 hr. DO take Flexoral (a muscle relaxant at night) for whatever that's worth. No aches or pains. Fatigue, but now have 2 supplements I've posted (maybe in chemobrain) for ENERGY that have kicked in. Had Vit H wkly '98-01, then switched to ev 3 wks. PARTY TIME. I can do this. I believe it is keeping me NED/STABLE.

Going for scans Thurs. Chest/abd/pelv. Mammog normal as of a few wks ago.

OH -- I used to get lidocaine like spray for port, then 2 different nurses told me they don't like to use it as it is an invitation for bacteria to invade. We NEVER want our port to become infected and travel throughout our body! So I stopped the lidocaine. Took 2 independent chemo nurses opinions and observations as a sign from the Universe. I'm very protective of my port.

In fact, I mentioned the other day that I get "contrast" for scans in port and the nurses were shocked. Too thick, could CLOG it up. I'd do 2 salines. I said that's what they do. And then heplock.

Don't know what to do Thurs. All these yrs of scans w/port use. Lousy veins. Many punctures till they get in and the vein doesn't collapse and/or roll over. WHAT DO YOU EXPERTS HAVE TO SAY RE CONTRAST AND PORTS??????? Love networking, don't you?! With all these mavens, professional proactive patients, wonderful Warrior Women. Love you all my Soul Sisters... ANDI

Ports and contrast
 

Hi Andi -
At my cancer center they WILL NOT use my port for contrast - no exceptions. The reason they give is that the contrast is given under pressure and they don't want to damage the port. I get a lot of scans with contrast due to frequent brain MRIs. OK if I got one of those Power Ports, but my onc does not recommend one of those for me as they are larger and protrude more from our body. She thinks I have too thin a profile to be a good candidate for one of those.

I have only my left arm for needle sticks, blood draws etc. and I try to preserve my veins there in the best condition possible. Been frustrated by having to get my blood checked every week since I have been on this anticoagulant therapy as it is usually in the lab area and they are not chemo nurses trained for port access. My poor vein in my elbow area bleeds afterwards due to my thinned blood. This week I will have them do it when I go for Vitamin H and my port is used.

Will be thinking and send you all the best blessings for a good report after your scans. It is funny how we get less anxious about these things the longer we are NED - at least in my case. More like a nuisance to get yet another scan! Have had 2 PET/CTs and 3 brain MRI's, plus two other scans to figure out this clot problem - all in SIX months!

I've been on weekly Herceptin since March and have managed to avoid any aches and pains. Taxol was added to the regime last Tuesday (6 days ago) though and I've felt fatigued and generally yucky since Thursday. This morning I almost called an ambulance because of severe chest pains (6 days after intial infusion) but decided that I'd lie down until I could actually talk and then reassess things as I really can't afford a trip to ER in addition to treatments. After almost an hour of the pain, it calmed down and I decided to sleep all day until work this afternoon and tell my onco. about it tomorrow.

So far, this has been the first pain in my cancer experience so it was a little disturbing. I don't know if it's from the Taxol, a panic attack (worrying about when I have to stop treatments because I just won't be able to get myself to the hospital and back on the trains or to continue to pay for my 30percent share of the costs.) or pleurisy from the cold that gave me the cough that warranted kicking butt with Taxol to shrink the lung mets or possibly the lung mets themselves protesting the Taxol? Worst case scenario? A heart attack? I'm turning into such a wimp these days.

Has anyone else had chest pains like this?

I'm thankful that the pain is mostly gone, just a little soreness around my sternum, and that I'll be able to go talk with my oncolgist tomorrow.

I feel like such a wimp now :-( .

No Contrast Through Port
 

You'd think some one would have mentioned this before last wk in the chemo, from the nurse, not the doc. I asked another nurse (as I had an issue w/my port) and took the opportunity to ask for more input. Then they called the doc who checked the port and said must use peripheral Vit H. I was anxious to get through this chemo and get to visit my husband at the hospital, and Murphy's law kicked in. I was there for 3 hrs (vs 1 usually). Doc agreed re NO CONTRAST THROUGH PORT. Hello, been a patient in several offices (NY and Fla) on top ca centers and no one mentioned. Thanks, Steph for your experience. I will NOT ever do that again. Sorry about all your sticks (always with one arm tied behind our backs). Hope your situation resolves soon. For me, after 11 1/2 yrs I still get anxious pre scans, worrying they'll find something and then assuring myself that this is just another occasion for them to reinforce my STABLE/NED condition. Like I'm taking out a new contract on my life. Paul and I then go out and celebrate w/dinner and wine, relieved beyond words. I get same day reports, going in 1st appt. P is worse than me. I stay home, near the toilet, he keeps busy running errands and keeps calling -- Did they call yet? No... You will be the 1st one I call when they tell me that beautiful word -- STABLE! He knows this. But he's antsy. When I do tell him, on the phone, I can hear him crying tears of joy. It's pretty overwhelming. Was ev 8 wks, then ev 3 mnths, then I pleaded for 4 mnths. Pegram graduated me in Feb '06 to ev 6 mnths. So this Thurs is my day.

Kathy -- on Taxotere I had chest pains, right between my breasts when naturally panicked me, besides all else going on. I'd have to unhook my bra. Would feel some pain in my left arm, which scared me even more, but that arm is where they took 18 lymph nodes, severing muscle, tendons, nerves. It does hurt still (from '95) from time to time. I find a Flexerol, muscle relaxant helps that. Buy with the severe chest pain my cardiologist told me to take 2 Prilosec a day. But they say to only take 1. You need 2 a day. And in a short while I stopped having chest pains. I have high bld pressure and am on meds for that. I check w/my cardiologist regularly. I was getting ev 6 mnth ECHOs, now graduated to annually, as I have been on Herceptin since '98. The likelihood for having heart problems has decreased greatly and my docs (and Pegram) feel comfortable w/my newest regimen, keeping on top of things. I get a transvaginal pelv sono ev 6 mnths to be told my ovaries are beautiful. The nicest compliment any one ever gave me!

You're no wimp, Kathy. This is all very serious business, our life and our bodies. You are a Warrior Women, smart, proactive, involved in your own wellness. Keep talking to your body. Breathe deeply -- in and hold and out, releasing all that is unwanted, toxic and negative... Vividly see yourself crossing the finish line victoriously. Carry that image within you wherever you go. Open your heart to Universal love and draw that energy to you. It will fill you up to overflowing, I promise. Sending loving, healing energy to all my sweet Soul Sisters... ANDI

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

TAXOL TAXOTERE (cousins) + HERCEPTIN
 

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.

Holdover pain from chemo
 

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.