update on Herceptin alone

Snufi · 02-09-2009, 02:42 PM

Hi to all you guys, Have done some soul searching and ane decided to find a dr. who will give me Herceptin alone and or with Tamoxifen? If you know of any, please respond. Anyways, I thought you guys might want to know this. On about page 400 of the Stimulus pack Congress is trying to pass is National Health Care. Yes, our Pres and some members of congress decided to sneak it in the stim pack. Basically if this passes the fed. gov. will have everyones medical records on file. When you go to the Dr. with an illness the dr, will enter your illness, age and cost of treatment to see if you getting the treatment is cost effective. Of course this is a big negative to the elderly. Also, what do you think the gov will think about Herceptin as the treatment for us middle age or elderly folks. Cancer is not a pleasant way to die. Also there will be a lot incentive for experimental drugs because if FDA approves, they usually are expensive at first and what do you think our gov will think about that. I guess the gov thinks a way to cut costs is to kill off people who would otherwisw live even though the treatment might be expensive. Snufi

alicem · 02-09-2009, 02:52 PM

Snufi,

Unfortunately I don't know of any doctors. I have my second chemo treatment tomorrow, I will ask my doctor about it.

Thanks for the heads up on the "Stimulus" package. I had not heard about this, but you are 100% correct. For those of you that want further info, check this out:

http://www.bloomberg.com/apps/news?p...d=aLzfDxfbwhzs

I'm now off to write my senators and congressman.

Alice

Patb · 02-09-2009, 06:08 PM

Please tell me this is not true. It sounds like a nightmare
for lots of Americans. What could we do to get a copy
of the stimulus package?
patb

Bill · 02-09-2009, 07:57 PM

I'm afraid there's an awful lot in this "stimulus" package that will not generate any jobs, and it's trying to be bull-rushed through. Snufi's concerns are valid. I'm not sure, but maybe the Heritage foundation has some info. on this tax increase package. I haven't checked it out yet.

Debbie L. · 02-09-2009, 08:19 PM

Hi Snufi,

Thanks for letting us know your plans. I wish you good luck in finding an onc who is flexible. Did you try asking an ombudsman/patient advocate at a nearby cancer center, and/or networking with men and women in a local breast cancer support group? If you are wealthy,
"Cancer Treatment Centers of America" are known for their ability to customize and tailor treatment to individual preferences (even they are dissed on their cost and their lack of state-of-the-art care). Since there doesn't seem to be anyone on this list local to you with a connection to such an onc, I again suggest these local networking options as a place to start. (not CTCA)

I have soapbox about "national health care". I will try not to get carried away with it right now but my thoughts are that we US citizens are horribly spoiled and have an entitlement attitude that is going to have to change, if we want to offer equal and quality care to all. We're going to have to make some concessions and we are not going to be able to have access to every single treatment we might want, if this is going to work. Frankly, I am more concerned about basic health care for all than I am about a few more months of life for a very few. That sounds harsh, but I think that it needs to be said (and thought about). So I say it. I don't like it, but I see it as the truth. I do not think that it's "killing off people who would otherwise live". The cost of our technology has outstripped our ability to pay for same. Either we agree to make concessions now, or we wait for absolute crisis to force change. If we wait, I don't think we have long to wait, alas.

Debbie Laxague

Bill · 02-09-2009, 08:47 PM

Debbie, I understand that you wish to provide basic health-care for all, at the cost of a "very few" gaining a few more months of life. However, it's not a very few people gaining a few months of life. It's hundreds and thousands of your/our spouses, siblings and children gaining prescious moments of life...and hope...that the longer that they can stay alive that a new treatment or drug can be made available. I believe that we have the best health-care system in the world. Sure, it's got problems, but many other systems around the world have worse problems.

Debbie L. · 02-09-2009, 09:21 PM

Bill, I hear you (I think) and I respect your opinion. Those of us who have benefited from our healthcare system of course tend to think well of it (me included).

But more and more lately, I am hearing from families who do not get even the most basic treatment for breast cancer, because cost is a factor. I'm sure it's the same for other cancers, and other chronic and life-threatening conditions. Sometimes it's not just the cost of the treatment itself, although that's usually the case. Sometimes it's the cost of time lost from a low-paying job without benefits (not even sick leave) - a job that means the difference between homelessness and a roof over the family's head. Just because someone has a low-paying job does not mean that they lack pride and honor, nor that they do not resist quitting their job so as to avail themselves of government assistance, such as it is. Sometimes it's the travel cost, from a rural home to a distant treatment center. Sometimes, it's end-of-life care that requires out-of-pocket expenses for help in the home that is far beyond the ability of many to pay for. This situation is not fair. It's not equitable. It feels wrong.

I say again that I do not like it that we have to make these hard decisions, between extremely costly treatments that may prolong life by days or weeks, and basic services for all. But I'm afraid that it's going to be the reality. I do not see how it cannot be the reality, unless we completely abandon the poor and the uninsured (a group that is growing in number, by the minute).

I realize that it's much easier to address this difficult issue in the abstract than it is in the personal and individual. I'm not saying that these are easy decisions. I am not saying these things to provoke or upset people, but to get us all thinking about hard things. A few years ago, I might have been more in agreement with what you say, Bill. But each soul that I've met since diagnosis who has bravely tried to make it through despite the financial mazes and hardships that they've had to endure has whittled away at my heart. It's not that I've hardened my heart to those who are desperate for that last-ditch chance. Not at all. It's that logic and common sense tell me that we have hard choices to make. If asked, I'm going to make that choice in favor of the one that benefits the most souls.

Respectfully,
Debbie Laxague

freyja · 02-09-2009, 09:39 PM

I'm happy to hear from you, Snufi. It sounds like you've done your homework and thought carefully and you know what's best for you. Best wishes and hopes for you to find the perfect doctor to help you through. May strength be with you.

02-09-2009, 09:40 PM

the Bill concerning health care doesnt just deal with people who are dying and have few days or weeks to live. It deals with chronic diseases also. For ex. take an elderly person with arthritis or MS. If the gov feels the cost isnt worth it because of their age it wont be provided. Now I know you all know that a person with both of these diseases I mention Are long term chronic and painful diseases. That means that person will live with those diseases without the benefit of a therapy, etc... that could severely reduce the pain for a very long time if the gov decides so. As far as breast cancer goes if the gov doesnt feel the treatment is cost effective for a particular person, they will disallow it. How would any of you like to die that way. It is a horrid way to go. The government has no business interfering with our health care and more so whether we have the right to live or die. Snufi

Sheila · 02-10-2009, 07:13 AM

Snufi
I was on Herceptin alone for over 2 years...but that was after I had a recurrence...it did keep me Ned for that time, then finally chemo was added. Of course this was back when Herceptin was only given after the cancer showed metastatic disease....So when I went from Stage 1 to IV, I got the Herceptin...that was 2003, i have been on it ever since.

freyja · 02-19-2009, 09:42 AM

http://www.oncologystat.com/news-and...motherapy.html

Snufi,
I came across this article you might be interested in. Let me know if the link doesn't work for you.
C

DLB · 02-20-2009, 05:56 PM

Snufi,

I have seen three oncologists and they are all willing to give me Herceptin alone; however, all have recommended chemo, as well. Once I explain my beliefs and desire not to have chemo, they have agreed to treat me with Herceptin alone. I feel they have also sufficiently tried to scare me into have chemo, so while I was previously very confident in my plan, I'm now second-guessing things. I need to make a decision soon, tho, because I was diagnosed in October.

D
--
- 1996 IDC, Stage 1, 1.8 cm, ER/PR+, Node Negative, Lumpectomy, Radiation, Declined Chemo and Tamoxifen
- Oct 2008, New Primary, IDC, Stage IIb, 4.6 cm, Node Negative, Grade 3, ER/PR-, HER2+, BRCA1