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Old 11-12-2016, 06:53 AM   #61
Juls
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Join Date: Mar 2014
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Posts: 563
Re: Need input!

Well - here we go again.

I broke a tooth a few weeks ago & looks like root cracked.
My own dentist not available and the one I saw wants to remove tooth. At that point I had to stop her and repeat that I'm on Zometa.
Next thing she is going to write to dental hospital Consultants for advice. Her next comment was you might have to go there to get root removed. I asked why - what would they do different? She told me " nothing just take onus off me"!
Having experience of this hospital I'm not keen to go back.
Geez - is nothing straightforward?
Now waiting for Consultants reply.

At hospital this week for Herceptin & Zometa etc. Told my Nurse about this.
Once again not happy. Her comment "you cannot have tooth removed".
So here we go again - major panic with me stuck in the middle!

In between times - tooth filled & so far ok! Waiting to see my own dentist but her hands may now be tied because of other dentist writing to Consultants.
Is it just me?!!

Last edited by Juls; 11-12-2016 at 11:34 AM.. Reason: spelling
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Old 11-12-2016, 11:23 AM   #62
MaineRottweilers
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Re: Need input!

How incredibly frustrating, Juls. I'm so sorry for your plight. I think we are supposed to withhold Zometa for six months before an extraction and and six months after. I could be wrong. Are you in pain? I pray not.
__________________
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!
2/5/18 CT & BS = STABLE

//
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Old 11-12-2016, 11:57 AM   #63
Juls
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Re: Need input!

Hi Tracy
I'm not in pain so hoping my own dentist can look at tooth and x-ray. Hopefully there is something else that can be done. I feel quite comfortable with her as she is a former staff nurse who retrained as a dentist. So she knows situation from both sides.

My Nurse did say to me - whats more important, bone or tooth? I said bone & that I wanted to have zometa. The tooth has been root treated and it is ok (at the moment).
When I got back to hospital in afternoon for treatment, my nurse offered to cancel zometa iv. Then repeated as I was leaving - no extractions!!

One of the other patients overheard my conversation with nurse & called me over to say she'd had a tooth extracted but bone damaged and gum needs packing every 2 weeks now. Because of situation with tooth, her op to repair fractures in leg & replace a pin has been postponed.

Geez!!
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Old 01-24-2017, 07:20 AM   #64
Juls
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Re: Need input!

Just an update!
This has been going on for months!
Eventually after many consultations, e-mail & tel calls about broken tooth - My dentist took root out with minimal damage to bone. Her words " just wiggled it out".
Oral Surgeon agreed with her that it was ok to remove but he suggested a stitch should be put in to help close over gum etc. She is now going to monitor for next 3-4 weeks to see how it is healing.

My Nurse still not happy - doubt if she ever will be - she has confided in me that it is difficult for her as the Oncologists/Doctors will not agree on how to deal with zometa and dental treatment. Some say go ahead with extractions etc, others are definite "no's." Not good for the patients!!

I might refuse next weeks Zometa though- probably pointless but think everyone will be happy with this decision!
Juls
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Old 01-24-2017, 07:36 AM   #65
Juls
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Re: Need input!

Another update!!
Just back from check up at Ortho clinic re met in femur.
No mention of suspected fracture mark in hip that caused the major panic last year.
Bone met - no change!
Op not required.
Check again in 3/4 months.

Now only CT report to go - Fingers crossed!
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Old 01-24-2017, 10:47 AM   #66
Mtngrl
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Re: Need input!

Good grief.

Stories like yours are what have kept me refusing Zometa so far. I have one bone met. I have tooth issues (who doesn't, after years of chemo?) I'm looking for a less risky way to deal with the bone met.

Hang in there!

Amy
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Old 01-24-2017, 10:57 AM   #67
TiffanyS
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Re: Need input!

Hi Juls, I just read you earlier post regarding your tooth issue, and I’m glad it’s finally been resolved. I’m sorry you had to go through that stress though. I’m also glad that your test results showed no change, and I hope you get a good CT scan result. Keep us posted.

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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
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Old 01-24-2017, 12:51 PM   #68
Juls
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Re: Need input!

Hi Amy

I did a bit of research at the time but it didn't occur to me to refuse! How daft am I!
One report mentioned it was an ingredient in soap powders etc & I still went ahead!
Nurse also told me that zometa helps with cancer - not just bone!! Not sure how. Fortunately now on 6 weekly IV's & hoping they will be reduced to 9 then 12 weekly.

It would be great to find a better way to treat!

I've convinced myself that Vit D helps so have increased my intake.
I'm working on the principle " every little helps"!!
Juls
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Old 01-24-2017, 01:05 PM   #69
Juls
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Re: Need input!

Hi Tiffany
I think Nurse more stressed than me. You would think they would have had some protocol in place.
All I did was wait till they all sorted it out - it was med team & dentist making all the calls. I told them - contact me when you have a plan!!

Mind you - I'm not looking forward to getting stitch out!!
Juls
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Old 01-26-2017, 10:39 AM   #70
Mtngrl
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Re: Need input!

Jules--

I think they think stronger bone is less cancer-prone. Could be true. But a new study on Zometa for early stage BC was discouraging, as I recall. For those with recurrences, they had less bone mets but more organ involvement. Since bone mets, by themselves, are not lethal (though they can be debilitating and painful, and people often progress) that doesn't seem like a good result.

Bottom line, we need a cure for Stage IV!

Amy
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Old 01-26-2017, 12:11 PM   #71
Juls
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Re: Need input!

Hi Amy

My Med team tell me bone will be stronger with zometa but other research tells me bone is actually more brittle, like a dry twig!
Juls
PS - Love the new photo!!
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Old 02-02-2017, 02:19 PM   #72
Juls
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Re: Need input!

Well here I go again!
At hospital today and taken into a side room.. Immediately knew CT report not good. I have waited 3 weeks for it and now I find out they knew I had progressed but didn't tell me earlier!
The scan showed a met in liver in exactly the same area that I had tiny met 4 years ago (had asked for ablation 4 years ago but by time Liver specialist replied the met had responded to chemo)
I have been offered a trial again (apparently my timing for this is perfect - Its only open for another few weeks)with TDM1 & an immuno drug ( or placebo). So it's a no brainier, I have to do it! If I don't I will not get TDM1 at all as its not given in my area. If Oncologist applies for it she expects that application would be turned down. Other offer was ablation and some unnamed drugs, possibly AI's, but if I do this I will be automatically excluded from trial. So looks like the trial!
Rest of report is good so trying to take positive attitude. At least it is not numerous mets.
Any thoughts or input appreciated!
Juls
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Old 02-02-2017, 03:54 PM   #73
Mtngrl
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Re: Need input!

Well, don't you wish stuff would stay "resolved?" Sorry about your progression.

Sounds like either arm would be a winner. If this is your only way to get Kadcyla, I say jump on it. Kadcyla is a "home run" for some people, and for most it's pretty well tolerated.

Amy
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Old 02-02-2017, 04:06 PM   #74
Juls
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Re: Need input!

Hi Amy
It is only way! So a "no brainier." Anything else means no Kadcyla!!
So even if I end up with Kadcyla & a placebo think I am still best on trial!
Can't start for 28 days - so timing works out, as last Xeloda was a week ago & I would start 3 weeks today which gives me 28 days!
Apparently I'm lucky!!
Thanks
Juls
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Old 02-02-2017, 04:36 PM   #75
Carol Ann
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Re: Need input!

I am with Amy ... I guess if this is how you get the Kadcyla, bring it on.

The timing is perfect ... another positive!! I am hoping this is your homerun that knocks your mets wayyyy out of the park!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 02-03-2017, 05:50 AM   #76
TiffanyS
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Re: Need input!

I’m sorry to hear about your progression Juls, but I agree with everyone that joining the trial is the only way to go. At least you’ll get TDM-1, which I’ve heard has worked wonders on a lot of people. I hope you get the immuno drug with it, but, even if you don’t, you’ll at least get TDM-1. Is TDM-1 not covered in the UK? Is that why you won’t get it if you don’t join the trial? I thought it wasn’t covered in Canada, but, it seems it is covered as a third line treatment. Given the success rate of this drug, I don’t understand why it’s not covered for you.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled
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Old 02-03-2017, 07:31 AM   #77
Juls
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Re: Need input!

Hi Tiffany
It's not given in my area of Scotland.
Oncologist said she could apply to "NICE" Med Board for it but she reckons 99% a "No".
I had already said that when I progressed I wanted TDM1 & expected a fight to get! The trial is with TDM1 & an immuno drug or placebo. So would get TDM1 regardless. It's the only way to get drug so a no brainier.

The immuno drug would hopefully be a bonus - although I am told it can have "strange side effects" (Oncologists comment)so think it might be obvious if you are getting it.

The only other option mentioned was AI's but Doctor pointed out "you have already failed on Femara." Now I have failed on Xeloda and Herceptin with Zometa.
I realise that scans are not infallible but I have had a few things missed so don't have much trust. Tumour is 2.5 cm in under 12 weeks!
Trial requires tumour testing & scans again to get on it & then frequent testing during it.
If not for this trial I don't think I would have great options for next treatment so I have got to get on it!!
Off all treatment for next 3 weeks. A bit worrying!
juls
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Old 02-03-2017, 08:23 AM   #78
TiffanyS
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Re: Need input!

Juls, I’m sorry to hear that TDM-1 is not covered in Scotland. It’s too bad because it has helped so many people. Is it because it’s too expensive? If the trial is the only way to get TDM-1, than that’s what you have to do. Even if you get the placebo drug, you will at least be getting TDM-1, which I hope works for you. It’s too bad that we still have to fight for drugs that could save our life, but, what can you do. I guess it’s all about the money! At least you’ll be scanned regularly while on the trial, and, I hope kept up to date on your prognosis. The next three weeks will go by fast, and then you’ll be getting the drugs you need.


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12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my scar. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled
TiffanyS is offline   Reply With Quote
Old 02-03-2017, 09:44 AM   #79
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 563
Re: Need input!

Hi Tiffany
Yes - all about money!
Have to do trial & only trial! If I do any other treatments I am automatically excluded from trial. If I wait (till after my Daughters wedding) I'm excluded on time.
I did immediately say "Yes" then Onc told me some other options which were not great.
It's my only way to get TDM-1
Juls
Juls is offline   Reply With Quote
Old 02-03-2017, 09:56 AM   #80
TiffanyS
Senior Member
 
Join Date: Sep 2016
Posts: 459
Re: Need input!

When is your daughter’s wedding? I’ve heard that there are very little side-effects with TDM-1, so hopefully you’ll be feeling okay for her wedding. You have to do what you have to do though, and you need this medication. I’m just glad that the trial is available for you.

¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬ ¬¬¬¬¬¬¬¬¬¬¬¬¬¬¬
12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s post surgical. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, with high levels of estrogen and progesterone and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for 18 months).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene. Tested negative for BRCA I and II
08/16 – Radiation oncologist biopsies “scar tissue” on my chest wall. I am told that I have a local recurrence and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery. Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet oncologist who advises that the ultrasound and bone scan results look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM-1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks in a row with one week off and then two weeks in a row for 8-16 treatments. Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancer, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-30 blood test – Tumour markers are normal at 19.
11/16 – Second CEA blood test – Tumours markers are still normal at 1.6
11/16 – Second CA-15-30 bloot test – Tumour markers are still normal at 19
11/16 – Develop lymphedema and have to wear a sleeve
12/16 – CT Scan shows that the tumors on my lungs and the lymph node in the middle of my chest are shrinking, and that some have resolved. Also, the small masses along my scar line are no longer visible. This means the medication is working!
12/16 – Small “pimple” shows up where old tumour on chest wall was located. Doctor is going to monitor it for now.
03/17 – CT Chest scan scheduled to see if there’s improvement to chest and lungs. If results the are good, I get to stop taking Taxol!
05/17 – Second brain MRI scheduled
TiffanyS is offline   Reply With Quote
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