Pain during PET scan?

cab_316

Hi all-

I am HER2+, estrogen + stage 4. I just had my 5th PET scan today. During the scan I got severe pain on my right side and on my back. The tech told me it could be an indicator of cancer. Has this happened to anyone else? This was after I got the radioactive sugar (about 30 minutes after).

I got diagnosed with stage IV HER2+/estrogen Sept 2017. Metastases were only on my left lung. And it spread through my blood and not my lymph system. My pet scan this summer showed NED but a mammogram done in July showed DCIS in my right breast. So a year and a month after my original diagnosis I had a double mastectomy on October 3. I know there is a risk of mastasteses after mastectomy so I was wondering If anyone else has had a similar situation

I am on maintenance Herceptin and Perjeta at this time and I am supposed to be on it indefinitely. I had six rounds of chemo (taxotere) last year from November 2, 2017 to February 16, 2018.

Thank you,

Crissey

LoriCA

Just throwing this out there Crissey, a few months after starting Herceptin and Perjeta I started getting severe intercostal spasms in my ribs, front and back. Just putting your arms into position over your head for the scan could be enough to trigger one. The pain from the intercostal spasms is enough to take my breath away and they can last several minutes. Hopefully it is something that simple, although it's still no fun to deal with. Bone mets are usually (but not always) more of a dull achy pain.

I'm surprised that the tech would say something to frighten you like that, without any additional basis for saying so.

cab_316

Hi Lori-

Thank you for replying! Our diagnosises are so similar - even the dates of diagnosis. Did your Mets come back even when you were taking Herceptin and Perjeta? I noticed your recent taxol chemo last month. Did it spread again? Just don’t know what to expect. My doctor acts like I won’t have any additional mets on H&Pbut I have wondered how long it lasts. Like walking on egg shells.

LoriCA

Crissey H&P has been doing a great job on my mets - my liver has completely resolved, my skin had completely healed and my skeleton still shows good signs of continued healing. Unfortunately my primary doesn't seem to respond to H&P only - shortly after I stopped chemo I had a full-blown recurrence of IBC. Since it's IBC the first sign is usually skin changes, nothing of concern showed on MRI so MO didn't think I could have recurrence so soon when the rest of me was doing so well, so I tried not to worry about it. Couple months later it was undeniable & it gets bad really fast (and painful), so we're trying the Taxol again since I had a great response the first time, along with H&P since it's still working on my mets.

I think the average is 18 months with no progression on H&P (don't quote me on that) but there are several women here who have been on it for 7-10 years and still NED or at least stable. There's a big difference between having 1-2 small bone mets, and having more extensive mets in organs. None of your DX or treatments are showing, not sure if you're keeping them private or haven't entered them - do you have IBC too? It can be really stubborn.

Lori

cab_316

Hi Lori-

Sorry for my long time to reply. I updated my signature so it now shows my diagnoses and treatments. I do have have IBC.

My PET scan was clear, so I think pain had to do with my right expander. I had never had a PET scan with expanders before, and it was on the right side where I have mild lymphedema. But that was such a relief that there was no cancer visible on that side.

Yesterday was a bit crazy however. I had my triweekly H&P and had a severe reaction to Perjeta. I was having trouble breathing, when I would take a deep breath I had a wracking dry cough, my hands turned bright red, and the nurse said my eyes were red. My oncologist immediately stopped the Perjeta (I had about 3/4 of the bag) and started IV steroids. When I got home I had to take 50 mg of of Benadryl and slept most of the day. When I got home my lungs were hurting, I thnk from all of the coughing. I feel better today but still feel like I have been sick. Just run down. My oncologist said she would continue the Perjeta with benadryl and steroids before I start treatment, but now I reallly just want to be on Herpcetin only. But that is also a bit scary because I do not want a recurrence.

LoriCA

Crissy do you have IBC or IDC? IBC is Inflammatory Breast Cancer, it's rare and very aggressive.

All of my mets have now resolved completely on H&P. Unfortunately my IBC recurrence turned out to be not only resistant to H&P but also resistant to chemo this time. It's spreading fast, so now we're trying to kill it with radiation. One week in and we've already had to twice expand the area being treated, that's how fast it grows.

There are many women who drop the Perjeta, take a look at the H&P thread here. The SEs of Perjeta seem to be harder to tolerate, and many decide it's not worth it. For the first several months H&P would make me feel like I was hit by a truck, and I would sometimes get the cough, but my hands never turned red. It's strange that you would have a bad reaction after being on it for over a year. Were you possibly dehydrated or not well rested? The SEs always seem much harder if I'm not at my best (well rested and well hydrated) when I get my infusion.