HonCode

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

Reply
 
Thread Tools Display Modes
Old 12-29-2015, 12:50 PM   #1
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Need input!

Hi All

Need some help!
I have just been told on 24th Dec. that my CT of 21st Dec. shows 2 bony lesions -
I quote:-
"2 bony lesions now noted that were not documented before.
1 in inferior left sacral wing.
1 in top of right femur.
Possible disease.
Have been there since January 2015"
This has really shocked me as I have had at least 5 CT's this year. I was on a trial and CT's 9 weekly. All CT's reported as Excellent! I feel so let down. The Hospital made a big thing about Rad/Consultant and that important same person read all Ct's.! Not sure on size (hopefully not that big if just noticed)
Today my Nurse called back to tell me what treatment has been decided for me -
Taken off trial (as I expected)
They are saying Xeloda with a biphosphonate (IV 6 weekly) plus continuing Herceptin. Herceptin will now be by injection into leg 3 weekly.
Leg to be x-rayed.

Nurse was upset that she had made things worse by telling me about "been there since January". She wanted me to know what was written. I told her that this has really concerned me.
A year and not noticed! Have lost a bit of faith & hope this week.

Can I have some input please? All thoughts appreciated.


Treatment to start 31st Dec.

Last edited by Juls; 12-29-2015 at 03:12 PM.. Reason: addition, spelling
Juls is offline   Reply With Quote
Old 12-29-2015, 02:53 PM   #2
Lucy
Senior Member
 
Join Date: Oct 2014
Posts: 202
Re: Need input!

Lots of thoughts running through my head. One of which is they said "possible disease" but it sounds like they're treating it as if it is a fact it's cancer. I don't know how things are done if it's in the bone but no biopsy? Will this plan treat any cancers in other areas of the body? I'd go forward with their treatment plan, for now because it sounds like you don't have much choice in the matter, but I'd be asking a lot of questions and would be considering going for a second opinion. Is perjeta lost to you now?

I'm sorry you're having to deal with this. Hopefully things will get better soon.

Sending you hugs
Lucy is offline   Reply With Quote
Old 12-29-2015, 02:58 PM   #3
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,067
Re: Need input!

A few questions I would ask is if the location and size has remained the same all this time. Did any other cts pick this up. Have all of them looked at by the same radiologist or rad onc. Really have someone study all those pictures and if your medical onc can coordinate the pictures in reference to what treatments you were on (or not on) when those pictures were taken. See if there were any changes when not in treatment.

What is your cancers hormone status? Erpr positive cancer likes the bones. If this is there, it may have changed and tamoxifen or something may greatly help.
__________________
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
Zometa every 6 months for osteopenia

NED 13 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 12-29-2015, 03:22 PM   #4
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Hi Lucy
Yes- I queried the possible disease part. Asked if Cancer or Osteoporosis etc. She replied Cancer!! No biopsy done or even mentioned. Unless it is suggested after next x-ray.
All other areas supposed to be clear. Your right, don't think I have much choice in this! Perjeta no longer an option now as it was a trial drug only. So far its not approved for general use here. Also Nurse said not working for me anyway (?) How do they know which one or in fact if all no longer working?
Have written list of questions.
Thanks
Juls
Juls is offline   Reply With Quote
Old 12-29-2015, 03:56 PM   #5
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Hi Becky
They say that it was only picked up on this CT but because found this time they have looked back at all Ct's. Knew where to look?!!
My understanding is that both lesions appeared/obvious in last weeks scan and I took that to mean they have grown. The wording on the report is a bit strange - "2 bony lesions noted that were not previously documented"
Really disappointed about this. I was told that it was same Rad Consultant that has checked all my CT's because this was best! Really!!
I am Triple+ and on Herceptin, Perjeta and Femara for last 2 years. Perjeta cancelled from this week(31st)
I had a tiny mark on L1 2 1/2 years ago that Oncologist thought was cancer. Even though CT's and MRI state not connected to cancer. Strangely enough on this weeks report they have actually written, for first time, that L1 "no change and not connected". They can see this tiny mark on vertebrae but missed pelvis and femur?!!
Really don't know what to think.
Juls
Juls is offline   Reply With Quote
Old 12-30-2015, 06:14 AM   #6
MaineRottweilers
Senior Member
 
MaineRottweilers's Avatar
 
Join Date: May 2013
Posts: 517
Re: Need input!

Becky gave really good advice and asked pertinent questions. I would add, they can't definitively say it's cancer without a biopsy or at very least a PET scan. I would imagine a biopsy would be an absolute must to be certain that the cancer hasn't changed at all.

Juls, I hope they are mistaken.
__________________
Tracy Arcari
___________________________________________
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!

//

Last edited by MaineRottweilers; 01-06-2016 at 03:39 PM.. Reason: can't
MaineRottweilers is offline   Reply With Quote
Old 12-30-2015, 07:04 AM   #7
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,067
Re: Need input!

How long have you been on Femara? It might be time to change to Aromosin. It is an AI that works differently than Femara and Arimidex. Faslodex is another alternative. An anti hormonal switch is probably in order.
__________________
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
Zometa every 6 months for osteopenia

NED 13 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"

Last edited by Becky; 12-30-2015 at 01:52 PM..
Becky is offline   Reply With Quote
Old 12-30-2015, 08:01 AM   #8
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Thanks Tracy
I think they have decided worst case scenario - seems to be the way here!
I am not sure if I will be given pet/mri etc & if honest not sure I want to go for further tests as they have always caused more problems. They then waste time on them (L1 mark) and miss the obvious! One of my reasons for being in the trial was - I was continually checked..After all they would catch things quicker!! So that backfired!!
Juls is offline   Reply With Quote
Old 12-30-2015, 08:17 AM   #9
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Hi Becky
Been on Femara just over 2 years. I did wonder about changing to another one. I will ask the question tomorrow when I see Oncologist.
Thanks
Juls
Juls is offline   Reply With Quote
Old 12-30-2015, 08:23 AM   #10
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Hi Becky

Does Finish have another name. Checked web and can't find anything!

Thanks
Juls
Juls is offline   Reply With Quote
Old 12-30-2015, 01:51 PM   #11
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,067
Re: Need input!

I don't know why my tablet wrote that. It was supposed to be Aromosin. I changed it above too so I don't confuse anyone
__________________
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
Zometa every 6 months for osteopenia

NED 13 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 12-30-2015, 02:01 PM   #12
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Thanks Becky

Will research it!

PS - Finish is a dishwasher powder here!!! Maybe its better !!
Juls is offline   Reply With Quote
Old 12-31-2015, 12:22 PM   #13
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Just an update.
At hospital today. Treatment as expected - to be Xeloda, Biphosphonate ( drug to be decided) & Herceptin by injection. Home with the Xeloda to start tomorrow. Also taken off Femara. Told not good with other treatments but then said might add in another AI later (?)
As I expected the comment re CT's -" now know where to look & a subtle change in January"
All CT's to be sent for and studied.
Onc asked me what I understood from this CT report!!
Bone scan & x-ray being arranged asap & Onc wants Surgeon to check bone.
Not sure what to make of all this but just have to go with it. No other option.
Thanks for everyone's input. Much appreciated.
Juls
Juls is offline   Reply With Quote
Old 01-06-2016, 02:13 PM   #14
Andrea Barnett Budin
Senior Member
 
Andrea Barnett Budin's Avatar
 
Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,903
Re: Need input!

So, Juls, a biopsy would obviously be necessary. They can say possible disease, possible cancer, but they surely need to confirm their suspicions.

I was able to get 2nd and 3rd radiologists to view my ev 8 wk scans back in the day and #2 and #3 disagreed with #1 -- none of them knowing the others existed or what their reports said. #2 and #3 decided they weren't looking at tumors but the dead remains of tumors. So if you can, get additional input. Mine came with onc #2 and onc #3 each independently asking me to see my scans and let their radiologists view them.

When I had June 2015 scans radiologist's report said suspicious of carcinoid tumor, which had been suggested by the previous scan which they compared 6/15 to.

Turns out without surg, which I declined, they did special ocreotide scan which would determine if what they saw was carcinoid and I passed the 4 hrs of scanning w/flying colors. NOT carcinoid, which I agitated about for a full year, till I got an oncological surgeon on board (an hr away, but worth the trip cause he's the only one who knew about this test). I thought my wonderful onc who knows everything would know about such a thing, but it was beyond his scope apparently.

Did you have the bone scan? Did you have an xray? Did you meet with onc surgeon to check bone?

What tx are you now on? You mentioned Xeloda, Biphosonate (to be determined) and Herceptin by injection.

Are you a part of the team who decides what the biphosonate will be?

Is anyone on this board familiar with Herceptin by injection?

I haven't heard of that before.

Did they biopsy yet?

Juls, please fill us in when you can. We are all thinking of you and hoping for your roller coaster ride to come to a stop, with conclusions. So much on your plate. Don't panic yet. Go with the tests and all the input you can muster so make a sane plan.

Hugs,
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
Andrea Barnett Budin is offline   Reply With Quote
Old 01-06-2016, 03:38 PM   #15
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Hi Andi
Biopsy not mentioned yet. Think they have decided it is cancer regardless.
Been on Xeloda since 1st and had Herceptin injection on 31st. It was really quick - just a bit stingy, took 3 minutes and finished. Leg a bit marked and achy for a day but otherwise very easy. A step forward.
I did ask about the bisphosphonates & was told Zometa/Zoledronic Acid. When I mentioned other ones (particularly oral bisphos.) & denozumab she decided we would discuss later. She did mention another one -Ibandronate (?) Think I was supposed to just accept Zometa. I am trying to research bisphos. but don't like info on any of them. Does anyone know if one is better than the other?

Wish I could request other radiologists etc but don't think that would go down well here!

Anyway enough of my moans. It's been a long day!

Hope you are well and thank you for your kind words.
Take care
Juls
Juls is offline   Reply With Quote
Old 01-20-2016, 05:14 PM   #16
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Becky
Re my comment about Finish dishwasher powder.
When researching bisphosphonates - one of the first articles I read started with
"active ingredient used in laundry detergents and fertilisers. Would you put in your body?"

Just a bit worrying?!!
Will know tomorrow which one Oncologist wants me to have. Feel a disagreement coming!
Juls is offline   Reply With Quote
Old 01-21-2016, 11:01 AM   #17
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Just back from hospital
Had leg x-ray today. They let me out so according to Nurse can't be an immediate concern (that I break femur)! What!!! Nurse also said "you have had (lesion) it a while" - Yes, only because it was missed on CT!
X-ray being sent to Oncologist & an Orthopaedic Surgeon to look at.
Didn't get bisphosphonate. Nurse not comfortable giving it because I have to get a root treatment next week. Even although my Dentist says its ok because only just starting bisphos. So one step back again. Also Zometa is bisphosphonate they want to give. I asked about Denosumab but apparently I don't fit criteria ( too young and no kidney problems) Plus it's too expensive! So looks like Zometa. Only good points are that I have 3 weeks to research other bisphos. & get root treatment done.
Does anyone know if one better than another?
Juls is offline   Reply With Quote
Old 01-21-2016, 11:32 PM   #18
supportwife
Senior Member
 
Join Date: Oct 2014
Posts: 38
Re: Need input!

Are CT you refer same as bone scan? I have always been told that CT only looks at soft tissue and not bones. A bone scan is more accurate to check for bone issues. Is that not true?

Thanks
supportwife is offline   Reply With Quote
Old 01-22-2016, 03:14 AM   #19
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 463
Re: Need input!

Hi support wife
CT and Bone scan different. CT can look at bones but bone scan is more accurate.

They have been using CT to monitor a mark on my spine (not connected to cancer)for last 3 years & it was in my last CT that 2 bone mets found.
Had to have leg x-ray as well - more detail!

Last edited by Juls; 01-22-2016 at 03:29 AM.. Reason: addition
Juls is offline   Reply With Quote
Old 01-22-2016, 12:51 PM   #20
supportwife
Senior Member
 
Join Date: Oct 2014
Posts: 38
Re: Need input!

Thanks Juls,

However that brings up a good point as part of regular scans, should we as patients / caregivers request for bone scan in addition to CT? From what I see, it does not seem like a protocol.
supportwife is offline   Reply With Quote
Reply

Thread Tools
Display Modes

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 07:33 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2017, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter