High fever, shaking and pain

[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