HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 01-20-2007, 10:27 AM   #21
KellyA
Senior Member
 
KellyA's Avatar
 
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
I feel the way that you do Lala- I just don't know what else to ask for. The bone scan showed the one spot. The x-ray and the CT were negative, and my marker was 20.3 The only thing left that I can think of is a PET, however, if I did knick this area, there probably hasn't been enough time for this to heal/change from the scan I had 10 days ago. What further testing can I do? I did read that the ribs cannot be effectively biopsied and that they would have to remove it to do that, which I don't think that we would do at this point.I don't even know what else to request...

Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

KellyA is offline   Reply With Quote
Old 01-20-2007, 02:58 PM   #22
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
Dear Kelly


Hopefully someone on this board who has or had bone mets will respond because I don't know if a bone met will light up with a PET scan but, I do know mets in the lungs and liver light up. A PET scan tends to be very definitive EXCEPT (haha - always an except) if there is infection or injury. And, your rib could very well be a bruise or bump (as both the radiologist and your onc don't think its anything to worry about at all). Therefore, I am afraid if you ask for a PET now and its a bruise, it will light up and it still wouldn't be anything to worry about. If I were you, I would kick back until my next Herceptin. Ask the onc to run the bloodwork again. Ask the onc how long a bruised rib would take to heal because you really want another CT or bone scan or PET (ask him which one he really recommends as a repeat - make sure you tell him if the CT shows no change would a PET confirm things one way or another) and then go from there. I don't know how long it takes a bruised rib to heal (a break is usually 6 weeks though so a bruise couldn't really take longer).

For your markers:

20.3 is not too high. I have a stage 1 Her2+ girlfriend (hormone negative) who is over 4 yrs out and her CA 27/29 has always been 40 (above the highest normal limit by about 2 points) and she is completely fine. Her lowest one was 35. I run been 8-21 (last one 2 weeks ago was 16). My first one was 11 but it bounces all over the place between those #s.

I hope this helps a little bit.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 01-20-2007, 04:16 PM   #23
KellyA
Senior Member
 
KellyA's Avatar
 
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
Dear Becky,

Thank you for your reply. I feel MUCH better. I agree with you in that if I have injured myself it would probably only show up again so soon on another scan (then I would really be upset!). I am going to do what you said and TRY to relax until my next Herceptin in a few weeks. I am a little suspicious because ever since they switched me to the 3 week dose I have had problems with pain- in my hip and now the ribs. Both feel like massive bruises.

What a wreck I am!!!!! I don't know what has happened to the calm cool collected person I once was. Level-headed was my middle name...:-) Now its Sybil! I hope you have a wonderful weekend and thank you again.

Love,
Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

KellyA is offline   Reply With Quote
Old 01-20-2007, 04:29 PM   #24
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
You have really made me think alot so bear with me here. I know that I told you that I got a bone scan about 16 months ago or so because my hip hurt me too. I think part of it for me (hindsight) is that I started a rigorous exercise plan (and I am older than you - 48 now). But my hip started really, really hurting when I switched from weekly Herceptin to every 3 week.


One thing about Her2 protein is that we do need it. Everyone needs it especially if you are injured or healing as cells need to replicate for the healing process. Therefore, if you have aches and pains, theory says it should hurt more if you are taking Herceptin because you are having an immune response at the injury site with more Her2 protein (naturally) present. I think this is why some women get bone pain while on Herceptin (especially the hormone positive women who get pain from their anti- hormonal) - pain from bone loss in this case (I realize this isn't you but I am thinking out loud here) so that is intensified because the body always tries diligently to heal and repair itself.

Give yourself some time to heal (it shouldn't take more than 6 weeks) and get rescaned (whatever method your onc and you decide) and go from there. I have a good feeling that everything will be fine.

Have a great weekend.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
Becky is offline   Reply With Quote
Old 01-20-2007, 09:35 PM   #25
Sandy H
Senior Member
 
Sandy H's Avatar
 
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
My experience with bone scan showing two spots!

I am in a trial so the protocal for me is scans every 6 weeks. In October my bone scan showed two spots on the ribs! My oncologist said it didn't make sense because my cat scan was clear. He said bone mets look two ways. They will show up as a white spot like a hole in the bone or a scape mark. Neither one of these showed that way. He said it didn't make sense and in that case he said usually its an error on the examiner's part. He said we would know in December 6 weeks later. He also told me if I was not in the trial he would scan me in two months for sure. In December the scans were clear. One of the secretaries in the oncology office had breast cancer 11 years ago and started having pain in her leg just below the back of the knee. It was a bone met (she has the same oncologist as me and he is the head one) and he told her its unusual to have a bone met in the part of the leg. But, they can occur anywhere. I hope my story helps that it maybe nothing but it is truly scary and I can understand how you are feeling. I will pray its nothing and it probably is but need to get it checked out. Please keep us updated. Sending you a big hug, from another Sandy.
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
Sandy H is offline   Reply With Quote
Old 01-21-2007, 05:46 AM   #26
KellyA
Senior Member
 
KellyA's Avatar
 
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
Thank you Sandy for your encouragement. It's a frustrating situation as I believe that "only time will tell" as I had many scans and a marker done. Unfortuneately waiting is not my srong point (as I think that it is with most of us!).

Becky, I thought that it was interessting that you made note of that with the Herceptin. My hip started to hurt with the first 3 week dose and hasn't let up since (sometimes I find it hard to even walk). The spot on my ribs did not hurt when I had the scans done, but after reflecting yesterday (all day :-) ), I realized that the pain began after my 3 week dose on Thursday. VEERRY INTERESTING. I am so grateful to be able to receive Herceptin and will deal with whatever it brings, as long as we know the cancer issue has been ruled out. ( I can handle the pain, just worry what the pain might be).

Anyways, I am going try try and think positive and wait until my next OV in two weeks and make a plan to investigate further. Nice thought- easier said than done. I almost had tood take a "happy pill" (from my old surgery meds) on this one. :-)

Thank you,
Love, Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

KellyA is offline   Reply With Quote
Old 01-21-2007, 06:21 AM   #27
DianaK
Member
 
Join Date: Feb 2006
Posts: 16
Hi Kelly

I had rib pain when I was doing Herceptin.I completed my year of Herceptin last May-also every three weeks.I suspect it has something to do with the Herceptin.Since I have been off of it-no rib pain-in fact feeling MUCH better all around!I know the oncs try to play down the side effects from Herceptin,but having been off it for a while-the side effects are real and irritating!Will be praying for you that it is just an aggravated rib-Diana
DianaK is offline   Reply With Quote
Old 03-26-2007, 10:49 AM   #28
SandyBB
Senior Member
 
Join Date: Sep 2005
Location: Central Massachusetts
Posts: 25
Update from SandyBB -

I actually logged back on to this site today after a long absence because I wanted to see what everyone was saying about Elizabeth Edwards.
I realized I should post an update for those who do searches in the future and could benefit from hearing my outcome -

As background/reminder, I was diagnosed stage 2B in Sept. 2003 with no evidence of mets. Then in Aug of 2006, I experienced severe pain in my left rib area(cancer was in my left breast) with no memory of any injury. All my bone scans in the past had been totally clear. This time they did an x-ray - nothing, then a bone scan which found a big hot spot on the rib which we assumed was bone mets. But, my blood work and cat scan were fine, and my onc swore that bone mets rarely showed up in only one spot. So - I waited 6 weeks, had another bone scan. Still there (but maybe, a tiny bit less bright). But no other spots. So then had a Pet Scan - totally clear. My onc said she was 97% sure it was not cancer. Wait 3 months, have another bone scan - spot much much smaller, no new spots-
Diagnosis - broken rib from weakening caused by radiation. X-rays do not always pick up a rib fracture. I could have had a rib biopsy but very invasive. If this last bone scan had not been so conclusive, I might have needed one for peace of mind.
SandyBB is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 09:12 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter