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Old 09-17-2007, 05:59 PM   #21
Becky
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Location: Stockton, NJ
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Hey Pink

Herceptin would have cost me about $60,000 USD. 4 rounds of AC followed by 4 rounds of taxol would have cost $75,000 USD.

You can get some discounts if not insured but I am giving the cost to insurance which is discounted. It costs more without insurance because the insurance companies have contracts with the doctors so the docs have to charge you less if you are insured!! Weird system.

I did have a $25 copay before each session - woopdee do. All in all, it was the most expensive haircut I ever had and the style did suit me at all!!!!
__________________
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"
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Old 09-17-2007, 06:09 PM   #22
hutchibk
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Even though our system is very problematic in many ways and totally upside down (driven by insurance companies and pharmaceutical companies instead of the consumer) I am personally mortified by a government run health system - talk about inefficiency, beaurocracy and financial waste. And in our current system, insurance companies have already turned beaurocracy into an artform... I know there are solutions out there to transform and turn it all around, however, I don't want another politically formed and mandated department in our govt... I want more time for the real thinkers to rise to the top in our country and forge a solution that is consumer driven. I personally believe that even though our insurance system is expensive and seemingly more and more off track every day, more people can afford insurance than currently carry it. I have many acquaintances who make a lot of money and spend it all on partying, smoking, keeping up with the Jones', and living beyond their means in very wasteful ways. Or they could devote a couple hundred a month for health insurance. There are many who could afford it, but don't make it a priority. I have friends who don't get it because they just believe it should be free, even though they can afford it. I wholeheartedly disagree with that concept. Yes, there are truly needy people in our country who need affordable healthcare. I know that. Now, about national health, I get tremendously pissed off at the concept of people who have lived a life of non-health and riskiness (lifetime smokers, addicts, promiscuity, crap diets/fast food, etc. etc.) and whose eventual catastrophic health concerns I might eventually have to contribute to take care of through my taxes, and that really chaps me. I have no solutions, but I am tremendously skeptical of jumping on a govt. run national health plan in the US. Yikes. And when the govt. decides to mandate how much a doctor's salary can be, then I fear we will quickly lose the finest medical care in the world.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-17-2007, 06:58 PM   #23
cafe1084
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I understand alot of you are in larger cities but I am shocked at the difference in price from there to here. My AC was $3200 x 4, TH $2600 x 12, then H $ 1400 a week for 40 weeks, not to mention mastectomy with all the add-ins $12,000, lumpectomy $7000, scans $3000-$6000, $400 per echo, $30 co-pay for onc ofc visits, etc., etc....even at what seems discounted prices I have accumulated at $100,000 worth of bills in 1 year. Insurance pays 80%, and that leaves me with around $20,000 I am responsible for plus $400 family insurance premiums monthly. And YES, they all want their money NOW! my dining room table is covered, so I draw 3 out every week and send them $10.00 each...what else can a single mom of three eating machines do??? BUT.....

The cost of being here with my kids and being cancer-free: Priceless
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Old 09-17-2007, 07:29 PM   #24
fauxgypsy
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I was told that the Herceptin was $5000 for the dose that I received today. My mastectomy bill for the hospital alone was over $16,000. I had to stay 4 days because of a fever. I am on medicaid (and thankful for it) through the Breast and Cervical Cancer Screening Program. I have yet to receive a Neulasta shot although I have had Arinesp twice and Procrit twice. I have noticed that you are more likely to get Neulasta if you have private insurance. The cost of these varies a lot from clinic to clinic. Of course billing and reimbursement are apples and oranges. Medicaid reimburses so little that many doctors will not see you if that is all you have. I have been fairly lucky so far, but my latest oncologist said at the beginning that he might as well be seeing me for free. It is not a good system. but it is all I have right now.

Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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Old 09-17-2007, 07:51 PM   #25
hutchibk
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Leslie - you can get Neupogen instead of Neulasta. It requires more injections, but it runs in the $hundreds instead of the $thousands. It's what they used before Neulasta, and my doc still uses it depending on the blood counts.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-17-2007, 08:08 PM   #26
Esther
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All this talk about healthcare motivated me to chime in. I know health care here in California, and the low income folks, making about 30k for a family of 4 qualify for free medi-cal.

Other than that, you are expected to provide for your own healthcare. I have spent a life time with NO health issues, yet always made it a priority to have top health insurance coverage.

Now, I have no problems getting any test, seeing any specialist or receiving treatment anywhere I want. I have great coverage.

After years of paying into the healthcare system, I'm getting the rewards. It's similar to car insurance, the years of no accidents would make it seem like a waste of money, but if you total your car and have no car insurance, will anyone feel sorry for you when you have no car?

Anyone who has the foresight to plan ahead in US has the opportunity to buy a healthcare policy. But like Brenda said, many don't make it a priority until the health need is there, and then it's too late.

Just my 2 cents---but I like the US healthcare system.
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Old 09-17-2007, 08:18 PM   #27
hutchibk
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I have to agree Esther - I have always had my own insurance. (only for a few years did I have employer ins, and a couple of those years were with a really lame HMO). It has always been a priority in my life. I have had amazing coverage since my tip-top health took a turn that day after my gyn exam... I honestly cannot complain with our current system for the most part. At least my personal experience with it. I do believe that ins co's and pharm co's are running a bit off the rails these days, and that we should be focusing on solutions to rein them in and shift the direction to a consumer driven system... but it should be left to the private sector. The needy and under/un-insured should potentially be dealt with on a state level as in California and other states. Just MHO.

I have used the car ins example for years when talking about this. I am totally perplexed why people will buy a sporty car they can't afford, that costs $400/500 a month for insurance (just to be cool or impress their friends), yet they claim they can't afford health ins. Often it seems to be an issue of personal responsibility and proper priorities...
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-17-2007, 08:26 PM   #28
Bev
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Hi all, the figures quoted all seem to be in the range of 3 to 5K per plus lab, plus this and that. Then you see what the insurance company actually pays, Usually 1/4 to 1/3. The Onc gets $36 for an office visit. That's the real cost if you have insurance. Lord help you if you have an income and no insurance.

We pay for our family insurance and it's 11K per year. No vision or dental, and our dental fees come close to that 11K for family of 5.

I have to say if you have a very low income, things will be done for next to nothing. I had a friend w/ pnuemonia in the hospital for 3 weeks on a ventilator and they settled for $750. There are plenty of clinics where she can get free mammos etc. But you are basically on a greyhound bus, no choice.

Because they're are so many uninsured they're upping our bill to pay for it. On the other hand I am really glad they treated my friend. So in a way it's a hidden tax.

Don't know about universal Health care. I love being able to pick my docs and dumping the ones I don't like, those that keep me in the waiting room forever.

I don't know if we're going to solve this one, but I am thankful for all the treatment options that were developed, out of greed maybe, in the USA. BB
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Old 09-17-2007, 08:31 PM   #29
Joanne S
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My insurance company is charged for Herceptin separately, (not for the administration of the drug, nurse, IV solutions, lab work , supplies, flushing the IV, etc---those are all separate charges). One Herception dose charge every three weeks is a whooping $10,500. My insurance pays approximately $4,000 per dosage, not the charged amount. I count my blessings that I have insurance.

Sounds quite high for Chinese Hamster Ovary proteins.
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.



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Old 09-17-2007, 10:10 PM   #30
Catherine
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My 2cents on a $100,000 treatment

I have not read all of the above posts. My insurance is luckily paying for my Herceptin. One year is approximately $100,000 USD. I go every 3 weeks. I have good insurance, but a high deductible. Last year with surgery, etc our out of pocket was about $12,000 for me. It will be about the same in 2007.

Yes, I think we should all buy pharmaceutical (sp) stocks.

Catherine
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 09-18-2007, 09:48 AM   #31
Andrea Barnett Budin
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Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
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Exclamation Pinkie Sweetie...


My Pink one, I did not forget our conversation. Last night, around ?9:30 I got a blank screen trying to SUBMIT my response to you. Then I went to WRITE and tried to remember what I was then talking about. Here it is...

Interesting. That puts a great onus on your GP to be super knowledgeable in every area. In my niece's case -- she has not been to a doc, period. Not covered. Can't afford it. I am esp concerned as she is a young woman, plus has an aunt who had met bc. I told both my dghtrs to get a base line which they did when I met (at ages 28 and 30). They were then advised not nec to follow up unless a problem. I don't approve. I have advised them to self exam mnthly and remind them that what I had was never a lump. It was a genl hardness, or sponginess, of the entire breast. I have explained other ways I've heard of it presenting. I have told my girls, now 37 and 39, that if I were them I'd go to a breast surgeon at least annually. I feel no one examines your breast as this experts. I never had a GYN examine me quite as thoroughly. My son-in-law is an OB/GYN and he answers all my many questions well. But he tells me generally he knows most everything about what goes on down there. Funny but not.

Here's my PS, after reading posts from last night to now. Leslie, you are so in my thoughts. What are your white and red bld cell counts at? Now you're on top of your case and thank goodness for that!

I am told that I am no longer considered a *chemo* patient. I am on a monoclonal antibody, so a whole set of OTHER rules apply to me re things such as Arnaesp. My low counts don't count as much as a CHEMO patient's, it seems. I find that rude. I am grateful not to be a CHEMO patient, and yet -- I do ev 3 wks to the chemo room to be accessed by a chemo nurse w/my infusion and I have a real issue w/my red bld #s and my enormous fatigue.

BTW, I LOVE my port. Finding a vein in my one good arm is a horror. Multiple sticks, veins collapsing, rolling over, blowing out. I have one in my wrist that works and that is it. I know H is as caustic as other chemos I have had, but my battered, bruised arm can't take the reg insult.

And once my wonderful insur co gave me approval for a brain MRI but denied contrast as ordered by my onc. Said, IF they find something they will let me go back and repeat the MRI with contrast. The report, of course, said, they see nothing, but stated clearly that it is very difficult to find met disease w/o contrast. Leaving me happy, nothing seen, but wondering... Doc exasperated, said something about a catch 22 and wasn't up to fighting, waved his hand and told me I'd be fine. That was a yr ago. Now, doc says if I was going to have brain mets I'd have had them long ago... WHAT A MESS HEALTH CARE IS IN, w/us falling in the cracks...
Andi



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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...
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Old 09-18-2007, 10:02 AM   #32
Believe51
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Talking Interesting post

We too had the best of coverage when my husband was working. After he was deemed disabled we did loose it and were left to depend on the state. Imagine that, 15 years of paying for insurance 'he' never used because he was the poster man for health and he is left there in the cold with a disease that is even colder. This is not to whine for it is my life, just amazing the turns life can make in a matter of moments.

Since he provided the household with medical and he turned into the patient, we are out to fend for ourselves. Again not complaining. Guess it is my way of yelling out loud. All I want is for him to get what he needs to have the fairest shot possible to beat this monster!!

Right now we are recieving what we need, not with ease but we are able to get billed for services. When we reach our quota he will have state insurance again, I will be without insurance until the next open enrollment at work. It sucks that last year we were driving a Cadillac El Dorado and today I cannot even pick up a prescription. (not a materialistic comment at all!!)

All in all I am just happy to have him here and the rest will work itself out. We are totally happy with the medical team helping us to get a grip on this journey and all of the different resources that have pulled together to help!!

Brenda, "Commitment To Access" is a wonderful program and we are truely blessed to have it here for us!! Thanks Love, your post got me on the phone and he will have his Tykerb tomorrow!!

Big hugs & prayers>>Believe51
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9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
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Old 09-18-2007, 11:55 AM   #33
hutchibk
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Great Marie - I am glad you made it happen!
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-18-2007, 12:22 PM   #34
Andrea Barnett Budin
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Thumbs up We've got one another's back...

Marie my sweet, You keep on making stuff happen! Sometimes we just need a little reminder, a nudge, and we snap into action. Stay connected to your spiritual nature. And tell Ed to hold on you and it too. (Hope he wasn't upset by my post to him yesterday. I just felt he was in need of one of those nudges to reset his mental chatter and come back to Life!) My love to you both, along with prayers for DANCING WITH NED! Remember -- delay is not denial. Sometimes we have to be patient, which trust me, is the hardest thing to accomplish in the world! I vote for instant gratification, but then I guess I don't get a vote. Want to sign a petition w/me? SOONER rather than later...!
Andi
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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...
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Old 09-18-2007, 12:44 PM   #35
hutchibk
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Yeah - I have needed to adjust internal dialogue a little lately, too. Don't know why it's a little off the rails, all is going so well. My counselor will kick me into gear today... that and reading Andi BBs posts!
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 09-18-2007, 01:01 PM   #36
mke
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Posts: 64
A CBC news release in 2005 said that the cost of herceptin would be about $40,000 CD for a course of treatment. When I started in 2006 I read something like $35-38,000 CD for treatment. I had 18 infusions so that would be about $2000 per infusion. However that would be only the cost of the drug, not the administration.

I think it was on breastcancer.org that there was a discussion of the price of neulasta shots, and there was a great deal of variance - a factor of about 3 if I remember correctly. It seems that drug companies charge what the market will bear.

I agree with PinkGirl that it would be good for Canadians to know the cost of the health services that they access. However I disagree that they abuse the system. I coordinated a study of around 3000 patients of 100+ family doctors over a 2 year period. We found some heavy users, mostly elderly heart, lung, and diabetes patients. There was only one clear abuser, a woman who was driving her doctor nuts. There was nothing wrong with her, but she was in to see the doctor about every 10 days. We picked patients randomly and he was horrified that this patient would be audited.
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Old 09-18-2007, 01:12 PM   #37
Andrea Barnett Budin
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Posts: 1,904
Wink You Made My Day!

Brenda, It makes me happy to know you don't think I'm an utter fool, all glowy and positive all over the place. I am sincere if nothing else. And then I have my moments. Don't we all??? My younger daughter Pami tells me at such times, after sighing, fully hearing my despair and pausing -- You need to get back in touch w/your spirituality. It works its' magic every time. I see that I have temporarily become misaligned! I have forgotten that I AM A SOUL, with a mind and a body. I immediately re-identify myself and my perspective totally changes. I see the world through the eyes of my True Self. Works for me every time.

And then sometimes, I talk to a special friend, one who's been there/done that and I feel I am HOME and understood. I have 2 friends I can rely on to tell it like it is and support me no matter what with love, not I gotta go now, I'll talk to you soon. Be strong, like you always are. Once it came from a friend I'd have never guessed it would. I was on a rant and she happened to call. And she heard me. She explained that growing up she dealt w/a lot of cancer in her close family. And she became this wonderful source of compassion and strength. Canser didn't scare her, like it does so many *normal* pp. I could feel her arms around me, her strong shoulder there for me, and I poured out my heart and then I felt a whole lot better. Brenda, guess your counselor can do that for you. I had 5 yrs of *shrinkdom* and was w/the wrong man from the getgo. But he kept convincing me to stay w/him to get WELL. Said I wasn't in a position to make that call, to leave him. I fell for it every time. Now, older and wiser, I tell every one, if you're w/the wrong counselor move on. You have to feel that click, that chemistry. Glad you've got a good one.

Rambling again, as I am prone to do. Thoughts come flooding my brain and my fingers start dancing on the keyboard. Oh, and I just have to tell you one more thing... BLAH, BLAH, BLAH. Glad to hear you're not thinking BLAH, BLAH, BLAH...!!!

With love. Here's to staying NED.
Andi

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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...
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