PET/CT Scan Results

tousled1 · 08-24-2006, 05:45 PM

I had a PET/CT scan done on Friday due to the fact that I was experiencing extreme bone pain. I saw my oncologist today and she said everything is fine! What a relief!! The only comment was that the right axillary soft tissue density had mild FDG uptake. The degree of FDG favors a benign process. It is recommended that I have a follow up PET/CT in 2 months.

I still have the extreme (and I do mean extreme) bone pain and saw my pain management doctor on Wednesday. He said that the bone pain could be a side effect of the Herceptin. When I asked my oncologist about that today she said she never heard of bone pain being a side effect of Herceptin. Her suggestion was that I switch to getting the Herceptin on a 3 week schedule instead of every week. I am going to try the 3 week schedule and hopefully that will help.

Anyone else experiencing bone pain while on Herceptin?

Chelee · 08-24-2006, 06:37 PM

I know I have not had bone pain from herceptin. I have been on weekly herceptin with the exception of having a 3 wk dose twice out of 7 months. I noticed no difference at all.

I agree with your oco doc....I haven't heard of anyone having bone pain from herceptin...but everyone is different...so who's to say for sure? Anything is possible.

My question would be. If herceptin IS the cause of your bone pain, why does your oncologist think having a 3 wk dose would be better and ease your bone pain? It seems a larger dose at once might cause more problems verses the weekly?

I am sure sorry to hear that your bone pain is that severe. I hope your pain doc can get it under control until you find out whats causing it for sure? Was that mild FDG uptake on the same side as the bone pain? Sending you warm healing thoughts.

Chelee

Sherryg683 · 08-24-2006, 09:41 PM

I've had bone pains, specifically in my rib areas don't know if it's due to the Herceptin or not but it's the only drug I'm presently taking. Herceptin isn't as kind to me as they would like to pretend it is. I told my oncologist today about the constant sinus headaches I am having due to Herceptin. We got into a nodding contest, he was shaking his head no, and I was shaking my head yes. He finally admitted that yes Herceptin could cause these problems but that he was not going to let me get off it. I told him I had no intention of getting off it, I just wanted to validate that these problems were something I had made up. I am 4 months out of chem and 2 months out of radiation and I still feel crappy, almost as bad as I was on chemo. I have totally no energy, i ache constantly. When I try to exercise, I will hurt for days, the headaches, the pain in my ribs and where the lymp nodes were removed all stil hurt. Is this from Herceptin or just a combination of everything I've been through. I have my latest scans to be done next Tuesday PET/CT and of course I'm getting nervous again. I just want to stay NEd for as long as I can, I haven't even gotten back to feeling decent, I sure don't want to be hit with chemo again...I'm praying daily..sherryg683.

julierene · 08-25-2006, 06:32 PM

I have BAD rib sensitivity and my nose drips like crazy after treatment.

So I assume the PET showed uptake in an area that was not important? It wasn't in the area you feel that pain right?

I told my onc that I felt like I went from 30 to 80 in my bones because of Herceptin. Though, it's worth it... I just feel like an old lady when I have to go up stairs and stuff like that. It's not like I am overweight or anything!! I was perfectly fine with that kind of thing until Herceptin. Now my ankles, wrists, shoulder joints, and hips hurt! Oh well... :-)

tousled1 · 08-25-2006, 07:50 PM

Julierene,

You're right the pain is not where the uptake was. I too also feel like I'm 80 years old - especially when it somes to stairs. My nose also runs like a faucet. I guess the side effects are worth the benefit.

Bev · 08-25-2006, 09:15 PM

Been on since Nov 05 and no pain. Affected side feels oddly different but no pain. Nose runs and diarrhea. I haven't seen bone pain as a side effect. It is for neupogen if you're getting that. I felt like I was on some torture device with Neulasta. Taxol can also linger with pain. My toes ache. Keep Whining!
We all need to let the docs know what is going on. In summary, maybe they should just run a bone scan. BB

tousled1 · 08-26-2006, 03:31 AM

Bev,

I'm not receiving Neulasta or neupogen anymore. I know when I was on Taxatore I had a lot of joint/bone pain as well. When I had to get the series of neupogen shots I ended up in tears with so much pain in the joints/bones. The Neulasta shot didn't affect me as bad. I'm just thankful that I have a pain management doctor. I've been seeing him for over a year. I had surgery and my lumbar spine is fused - complete with all the rods, nuts and bolts. Perhaps that's another reason Herceptin affects me. All I know is that before Herceptin and after surgery I was feeling like a human being. Guess I'll just have to be patient.