High fever, shaking and pain

[Patb]

Hi all

Just a question that even has my Dr. puzzled, Just got out of
hospital for three days with fever, shaking, and aches all over.
They cultured the blood and nothing grew, because I have a port.
The blood test did not show anything but high white count fighting
infection. Could herceptin cause this a week after infusion? I have
never had any problems before. Now I am afraid of my port and
don't know if I want to keep it. I have 6 more months on herceptin.
This came on so quick, in just 30 minutes and that is scarry.

Thanks for any suggestions if you have experienced this.

patb

[Becky]

Hi Pat


If these symptoms occured a week after Herceptin infusion, it is not from Herceptin. The flu-like symptoms from Herceptin tend to only occur during the first (loading dose) infusion and it usually occurs within the timeframe of the infusion (although can happen within the first 24 hours).

You may have had an infection from any source (not necessarily the port). I would give it another whirl. If the port is giving you problems - you could have it removed. I did 4 ACs, 4 taxols and 16 months of Herceptin all in my left arm veins (and got a Zometa only treatment for my osteopenia on Thursday). So Herceptin alone and certainly be done in just the arm if your up to it.

Stay well

[Mary Jo]

After reading your post I tend to agree with Becky. I also did all 4 dose dense A/C - 4 dose dense taxol along with herceptin and herceptin continuing for 1 year all in my left arm veins. We were fortunate Becky. I didn't want a port and my onc. was totally fine with that. Most definitely an infection could have come from any source. Definitely not only the port area. I sure hope you feel better quickly and this does not happen to you again.

Becky, question for you after reading your post. What is osteopenia and what is Zometa? Hope all is well.

Hugs to you Pat and Becky,

Mary Jo

[Jen]

Hi Patb,

Indewelling ports or central lines are always at risk of becoming infected. If your blood cultures were (-) then that means you don't have septicemia (an infection in the blood stream) which is a good thing. Your elevated WBC count is due to your body fighting infection somewhere else. My daughter had an indwelling port for intermittent antibotic infusions for I'd say almost 6 years and never experienced any complications with the port until it quit working due to a fibrin sheath forming on the tip of the catheter. Good luck and I hope you feel better soon.

Jen

[Becky]

Mary Jo


All is well with me. Osteopenia is the early stages of osteoporesis. When I got my ovaries removed I had a bone density test and it showed the beginnings of osteoporesis in my spine (my neck and hips were fine). Since I am moderately ER+, I am also on Arimidex. Lack of estrogen can speed up the bone loss process. Since I was getting Herceptin IV, my gyne and onc together decided that I should get Zometa (a bone hardener in the same class as the oral drugs Fosamax and Boniva) but Zometa only has to be given every 6-12 months. I was due for an IV which kind of through me for a loop because I thought once Herceptin was over and it would be time to do something, my onc would just give me something oral. So when I went for my normal 4 month check this Thursday and he said "let's go to the infusion room", I almost started to cry. The nurses were a bit freaked out to see me until they all knew I was really ok. When the nurses see you back in the infusion room, its usually not a good sign but it was this time. One old man in there said, "you look healthy as a horse"! And I said I was.

[Andrea Barnett Budin]

Pat, I'm so sorry you have to go through this added turmoil and scary pain. Elevated white cells must mean your immune sys is kicking in to fight an infection. I am a firm believer in 2nd, 3rd even more opinions. I went to top docs, brilliant, that I loved and respected and they each had no problem w/my seeking added input. Finding the cause of the infection is tricky and as two heads are better than one, three, etc. are all the better for you to get to the cause.

I'd been getting Ct scans every 8 wks when on Taxotere (w/met BC into the liver and multiple tumors, after mastec and 4AC+8CMF 3 YRS EARLIER). The radiologist gave exact dimensions of each tumor each time. 6 mnths later my 3rd onc said bring me the xrays and I'll have "my" radiol (from NY's Mt. Sinai read them). He said he wasn't sure what he was looking at were tumors. They seemed more cystlike, filled w/fluid. I forged on w/Taxotere, w/all the miserable weak, wobbly, aching side effects. 2 mnths later my 4th once said bring me the Xrays and I'll have my radiol read them (formerly w/Sloan Kettering). Unprompted, he said exactly the same thing as the Mt. Sinai radiol. He said what he saw appeared to be not tumors but the dead remains of tumors. ?Necratic tissue. I went off Taxotere, stayed w/Herceptin only from '98 TO NOW. I have been NED (no evidence of disease -- STABLE) SINCE mAY OF '99. I guess my point is -- it really pays to make the extra effort, even when you feel like a limp rag to go and seek further input. I am blessed to have my husband to drive me. I lowered the seat flat and closed my eyes, barely able to keep my head up. At one point, at the 3rd onc, waiting, I put my head in my husband's lap. NOT a thing I would ever imagine myself doing. I felt soo sick. When we got in I casually asked, Oh and what is this bug bite on my belly? He looked and immediately said HERPES ZOSTRA -- SHINGLES. If you catch it early, as I accidentally did (not having my reg onc appt for another 3 days) you can wipe it out fast. In 10 days I was able to get back on chemo (as white blood cells were dangerously up, fighting the shingles). Cancer's a big puzzle and you must keep moving the pieces around to make things work for you. I wish you a speedy journey finding the cause of your infection, getting to the bottom of the conundrum and getting back on the road to healing and wellness. My prayers are with you. Sending love and healing energy... Stay strong (minded), brave and passionately determined to keep your head above water! ANDI

[Patb]

Thanks all for your suggestions and replies to my problem. I will be going
for a complete physical Tuesday just to be sure. Now I am so afraid of my
port. By the way, what is the port composed of, plastic? I was wondering if
I can have a breast MRI with the port in? Thanks so much for your input.
patb

[Jean]

Hi Becky,
I am in the early stages of osteoporesis also, taking actonel 35mg. each week.
Just curious if zometa is better....I sure like the time frame of zometa 6-12 months...sounds wonderful. How long is the infusion for zometa? I will be seeing my onc. 5/16 (very last hercetpin) wow - where did the year go?
(guess I was having too much fun to notice)..and I am sure your nurses
were shocked to see you.

hugs,
jean

[Andrea Barnett Budin]

You can check this w/yr onc or the doc/surgeon that put it in. You can take that info and GOOGLE it for specifics.

I know my port (and my surgical clips from my mastec/flam trap reconstruction, which I see clearly in a chest xray) AND my steel plate/pins/screws that were put in place when I stepped into a NY pothole and broke my ankle and needed surgery -- do not deter me from having an MRI, FYI.

Let us know what you find out about yr portecatheter, please. GOOD LUCK.

Try not to start a thought or sentence with I'M JUST AFRAID THAT. Acknowledge the fear, but get beyond it. Act w/due diligence but w/faith that you are on top of the situation and will resolve the issue. Don't give your power away to any one or any thing -- at any time. You have the power to stay in control, to determine your feelings (with are initiated by your thoughts), to program your thoughts focusing on what you truly want vs what you truly fear. The energy of your thoughts goes out into the Universe. It is sensed and responded to IN KIND. Call your desired destiny to you! You are personally empowered. Never forget that! With loving energy, ANDI

[RobinP]

Pat, I think it is important to remember that everyone has different reactions to meds. Herceptin may be doing this with some kind of delayed kick in side effect response; although, it is probably likely that it would have happened sooner. Also, I would ride this out a bit before you go on a serious witch hunt of reasons why this is happening. It may just blow over soon for you, which i hope it does.

Jean, please don't be so anxious to switch to IV biphosphonates just because they sound more convienent. The IV form has a MUCH greater risk for osteonecrosis of the jaw which is not very treatable, if it does happen. I would never take the IV form unless it was really a severe bone loss situation, as the oral form is a safer alternative.

[Caroline UK]

Patb,

I became neutropaenic when I had my first lot of Taxotere, and I've never felt so ill and wiped out in my life. It was very frightening. But they sorted me out and I made a full recovery, with a whole new respect for the human body.
I can understand your fear now of your port, but I'm wondering if it might have become something concrete for you to focus all your other unspoken fears on?
It seems to me that there is always a risk of infection, and that if anything, there's more of a risk if you don't have a port, with having to have veins freshly accessed every time.
I can also understand wanting to know where the source of infection might have been. (It sounded too far away, time-wise, from the Herceptin infusion for it to have been anything to do with it). But my thinking is that you probably don't have a lot of time and energy to spare, and that maybe there isn't much point now that you're recovering. Isn't it more useful to your health and happiness to spend that precious time and energy enjoying feeling better, and having laughs and nice times with family and friends? I hope that doesn't sound flippant or as if I'm dismissing your concerns, I really don't mean it that way.
By the way, I think Portacaths are made from silicone, as the body doesn't reject it as a foreign body or try to encapsulate it with fibrous tissue.
Best wishes for a speedy recovery

[Andrea Barnett Budin]

Caroline, I so agreed w/your last posting. We don't realize it as we're doing it, and it takes a "sister" to talk us down. For example, I had a huge pain in my left arm (mastec was on left, in '95, + nerves and muscles cut getting to 18 nodes) that was obsessing my attention. Am I getting lymphodema? Am I having a heart attack? I'd been flue sick for 3 wks. I took a while to realize, my wonderful lifeline Onc's right hand Nurse was leaving. She gave me her home phone #, feeling like she was abandoning me, w/no comment made by me. She couldn't even face me to tell me she was leaving. So I switched to an incoming onc to the Cancer Center that is like my home. Been on Herceptin wkly '98-01, every 3 wks - NOW. Everyone knows me, my name, gives hugs, smiles, chats. This new onc is the one I orig started w/in Boca who had moved, listed as New Yorke Mag's top 100 docs in the country, specializing in BC. I was stressed more than I realized about the change. ANY change throws me, in genl. He hit me w/you need a brain MRI. You need genetic testing. You need colonoscopy. I had heard about BC going to the brain (my very worst nightmare) and was going to ask, but then it came from him. I was frightened of the "tube" and claustrophobia. I was terrified I'd be BRCA 1 and/or 2 Pos. I have 2 daughters and 2 granddaughters. I felt guilt just thinking about the possibility, which is irrational, but so are emotions. I was not my usual optimistic self. I was full of doubt. AND FEAR. I have developed IBS (irritable bowel syndrome) since Taxotere ('98-'99) that has stayed w/me, which in and of itself involves fear of leaving the house and having that urgent need and not getting to a bathroom in time. Another horrific nightmare. When I had my last colonoscopy I was literally in the bathroom for 8 straight hrs. I didn't know the body could hold that much! Talk about new respect for the human body. It's an amazing machine -- powered by the MIND, which means everything you think. Some thoughts are not conscious of course. It took me 6 mnths to become conscious of what was happening to me. I was a mess, whereas I am normally told how strong and brave I am. People tell me I'm their hero. I became a wimp. Even knowing to stay as far from fearful thoughts as possible, as they poison our bodies, alter our body chemistry, hamper our immune system and get us caught up in obsessive thinking that chains us to remain in a cycles of fear, pain, more fear, more pain and on and on.

I don't mean to talk about ME. I am actually thinking about those of us who are full of living scared and lonely. In my 12 yrs of cancer, I had a bad run which I think exemplifies the point I'm trying to make about being on guard to all your fears. Like concentrating on being afraid of your port, when there's probably a lot else going on in your head, unconsciously, that needs to be picked up and experienced and then booted out. Any sentence that begins with I'M JUST AFRAID THAT is one to stop and analyze thoroughly.

You are all so wonderful. I admire your grit, your search for information and your unique ability to support others just like you, just because of this weird bond. I love you all. Sending healing energy... Andi

[hutchibk]

My onc only wants me on Fosamax or Boniva for osteopenia. He DOES NOT even consider the IV biophosphenates until he sees multiple progressive bone mets.... which I don't have. Too many unintended consequenses, like Robin P. said. Sometimes more, bigger, stronger is not always better!