Calling all TNs
Comments
-
LauraJane - so good to hear from you
. It sounds like you have found a wonderful resource to help you with your aches and pains - but don't let your doctor off the hook!! If you are feeling pain, make sure she hooks you up with a pain specialist who can help you. I just love your outlook, and your strength gives me such a boost. Hugs to you.Slaying - MBJ is right, it is unfortunately our new normal. Bumps, lumps, aches, tingles, you name it - anything we would have ignored before now seems so ominous! Don't give a second thought to your doctor - if he told you to keep an eye on it and rescan if you are concerned, that is exactly what you should do. Proactive - even if you feel paranoid - is all we have to be in control of this mess.
MBJ - Oh so exciting! I've moved over several states in my life - Florida-Michigan-North Carolina-East Coast - and it is so new and wonderful, even with all the stress. The knowledge that it will ALL be new, full of possibilities, always made me love it. Good luck with the final move!!
DenMac - welcome, and what wonderful news about your response to chemo! That is definitely cause for celebration.
Painting - I know it must be hard to not look back with regret, but I don't think you made a bad decision skipping the AC necessarily. It is such a hard chemo drug on the heart, and it isn't as effective for TNs as the Taxanes from what I understand. We always second-guess ourselves, I can sure relate to that! I'm surprised you are on 6-month visits at MGH! I'd think they would want bloodwork at least quarterly.
I am so sorry to hear about your friend. My thoughts are with her, and you as well.
Marni - welcome. I gained about 20 pounds on chemo - the steroids made me ravenous, and all I wanted were carbs, carbs and more carbs - and not the good kind! The good news is once chemo was over and I didn't do the steroids, the weight came off as my eating habits changed. Hang in there. Even if you only do a 10-minute walk around the block, it is something.
~~~~~
Treatment day! Having some back pain today, likely because I stayed up half the night working on needlepoint for my kids, lol.
Good thing for the day - after treatment, DH and I will have a nice quiet dinner in Boston. It is the one nice thing about this day, we get to spend a little time together with good food, and then come home to the chaos.
0 -
MBJ- again I hope your move goes smoothly. How exciting!
Slaying- when my cancer came back I felt a hard pea size lump under my armpit on a wednsday, and then a couple of more that Friday. I think if you feel anything like this request a scan. Then you can rest assured it isn't anything.
Suze- I hope your chemo continues to go smoothly with no SE's. More important I want it to work!0 -
Laurajane! I missed your post! I cannot wait to get there, settle in and see you. My friend here in California who is Stage IV has been working with a healer and has had great success. When I did my research, Morphine can compormise the immune system so ask your dr. about Tramadol instead. Go to LifeExtensions.com re: the morphine. Hugs to you and if anyone can beat this, you can. Hugs!!!!!
0 -
Laurajane girl, your bright light is reaching me here. Your words just brightened my day today, so thank you. I also feel that you will live a very long, healthy life. Just something I want to share with you - According to the Hindu Holy book, "Geeta", referred to as the song of God, it says that all that "a human being really needs to do is to do the deeds, take action with a clear conscience, pure heart, pure intention". They should not look for the results of their action. The results of the action is in the hands of the creater only. Taking action towards healing your body to the best of your ability with the knowlede that the creater has provided you, is what you are doing. Leave the results to the creater. So good to hear from you. Thanks for the inspiration today.
0 -
Slaying - I am one year 3 months out of treatment and recently started feeling a lump in the scar tissue area. MRI, Mammo and ultrasound didn't show anything. Although the lump actually showed up after the MRI and Mammo. The US was done to look at the lump and they couldn't see anything in that area either. I have very sharp pains and lumpy feelings all the way under my arms as well. I even have sharp pains in the other breast as well. I have been to the radiologist, nurse practioner, surgeon and radiologist oncologist, they all said it is the scar tissue maybe swollen from the heat of the MRI. This happened around August 16. I have since settled down thinking they all can't be wrong. But I swear, I feel the lump. They also felt the lump but one of them told me that biopsies are invasive, don't do it. The surgeon actually told me that it takes 3 - 5 years for cancer to develop and that I will glow in the dark if I get any more scans or tests done. She basically told me that radiologists make a lot of money doing all these scans, and that I should save my body. When she said that cancer takes 3 - 5 years to develop, what does she mean by that? What about the fact that TN statistics say that 1.9 year after diagnosis is when it statistically can come back. They all contradict each other, my God, so confusing. When I told the radiologist that this new lump thingie, it comes and I can feel it sometimes, other times I don't feel anything. He told me that BC won't do that. He is so very wrong. In my experience, that is exactly what a cancerous lump does. This woman at work who got lately diagnosed, the first thing she told me was that she could feel it sometimes, other times, she couldn't feel it at all. What are we to believe? I am shocked at the contradicting things my providers say to me. I am just not doing anything, no biopsy, no scans, just hanging in here, waiting for an MRI in January, 2012. Should I get a biopsy ladies. Also, lately I am having a headache. Sometimes I think it is from the free weights which I have been doing lately, the pain goes in the neck or around there somewhere. And other times, I can feel it pulsating or burning near my right ear. Could it be brain met? Oh, what should I do? I have become so numb, not doing anything, just waiting, not sure for what? Anyone else feels like me?
0 -
LJ: So wonderful to hear from you. I hope the healer is helpful, you really deserve it! Does your onc have some other chemo options up his/her sleeve? What do they advise? Obviously this disease presents some really difficult choices - it's so crappy that you have to deal with it... let the strong spirit prevail.
Suze: Good luck with your treatment. Hope you and hubby have a wonderful dinner.
MBJ: I've lived in the same city for almost 40 years. To be honest, I can't imagine picking up and moving and yet, something makes me want to do it too - a new start, adventure etc. All the best with the move. But take it easy on that slimmer body of yours!
Marni: Sorry you're having such a tough time - are your doctors okay with you carrying on?... because if there's a way you can, I say go for it! The crappy SEs, weight gain etc. will eventually disappear and you'll be in a healthier, happier place than you are now.
Slaying: yes, lots of aches and pains linger. I've had the odd shooting pain in my lumpectomied (new adjective, gals) breast, and it is very tender if touched firmly. Lots of scarring. My docs are very vigilent as am I. If you have any doubts, ask for a scan.
Denmac: Congrats on such great results! The great thing about neo adjuvent is that you know it worked.
I've missed others on this active thread, I know. Hope you are all doing okay.
0 -
Hi Ladies, I don't write often but I read every post and think of you all often.
Titan - the wedding pics were beautiful! Suze - I'm glad your SE's are minimal and I pray they continue that way. MBJ - Good luck with the move - so exciting! Hope it all goes smoothly.
Heidi - Iceland looks beautiful! LJ - Think of you and praying for you everyday! You are an admirably strong woman - kick some cancer a$$! Slaying - I had the same treatment and my period came back about 5 months after my final rads.
Welcome to all the newbies - you have found a great bunch of women for support. Stay strong.
{{{HUGS TO ALL}}}
0 -
LauraJane, glad to hear from you!
Susan
0 -
Suze-Glad trearment has no SE's for you. I felt really pretty good until after the 6th treatment and about that time I got a really bad cold/infection so I think that is what started me not feeling so well with the abraxane, I was just run down. This last treatment was a bit bad, number 10, but now I am starting to feel better-treatment again on Friday and then one more after that! My doc is going to put me back on Avastin after all my surgeries and radiation, he hasn't mentioned anything else.
LJ-Glad you are seeing a healer! I hope you find relief. Have you been watching funny movies? I think anything to bring our minds to a good place is a good thing!
Lovelyface-I don;t think you should have to worry until Jan. I would get a biopsy or do whatever will make you feel more at ease. Maybe give yourself 2 more weeks and then decide, and during that time try not to think about it, write it on a calendar when 2 weeks is up and then see how you feel. I know, easier said than done! Try not to touch the lump or area for that time. SOmetimes I feel a pulsating near my ear, not often but it does happen. Could be blood pressure is off or ear infection. It is so normal to have aches and pains, we are just super alert to everything with good reason! Hang in there and keep us posted. I wouldn't count on the 3-5 years for cancer to develope, I think it is so different with us triple neg, that being said, I think you would feel even more changes if something was going on. Wait the 2 weeks and then re check.
0 -
Slayingthebeast- son is 10 and my is daughter is 4....the very busy stage.
Ladies-every pain takes me there. I try not to feed into, but I can't help myself. Can you blame us???
0 -
Hi guys. Back from our trip and am having a lazy day with the pups. In fact, they are having a lazy day too! Kennel owner said they would probably sleep all day and she was right! I have never boarded a dog before and it had to be very over-stimulating for them.. all that barking by other dogs (my guys are very quiet types, though physically active). Lovely facility though.
Suze and LJ- you are so often in my thoughts, and I am pleased to hear that (Suze) you are flirting with the Stable Boy and (LJ) you have taken a very well thought out approach to your situation. I think it will help you find peace of mind and body as you travel along your challenging journey.
As always, I let others in here take a more active approach to the help & advice topics, preferring to offer my little mini distractions (jokes, pics, etc. ) along the way. With that in mind, here's some more:
They Walk Among Us and Many Work Retail
I was at the checkout of a K-Mart. The clerk rang up $46.64 charge. I Gave her a fifty dollar bill. She gave me back $46.64. I gave the money back to her and told her that she had made a mistake in MY favor.
She became indignant and informed me she was educated and knew what she was doing, and returned the money again. I gave her the Money bac k same scenario! I departed the store with the $46.64.
They Walk Among Us and Many Work Retail
I walked into a Starbucks with a buy-one-get- one-free coupon for a Grande Latte. I handed it to the girl and she looked over at a little chalkboard that said 'buy one-get one free.' 'They're already buy-one- get-one-free, ' she said, 'so I guess they're both free'. She handed me my free Lattes and I walked out the door.
They Walk Among Us!
One day I was walking down the beach with some Friends when one of them shouted, 'Look at that dead bird!' Someone looked up at the sky and said, 'Where?'
They Walk Among Us!
While looking at a house, my brother asked the real estate agent which direction was north because, he explained, he didn't want the sun waking him up every morning. She asked, 'Does the sun rise in the North?' ; When my brother explained that the sun rises in the East, and has for sometime, she shook her head and said, 'Oh I don't keep up with all that stuff.'
They Walk Among Us!!
I used to work in technical support for a 24/7 call center. One day I got a call from an individual who asked what hours the call center was open. I told him, 'The number you dialed is open 24 hours a day, 7 days a week.' He responded, 'Is that Eastern or Pacific time?' Wanting to end the call quickly, I said, 'Uh, Pacific.'
They Walk Among Us!
My sister has a lifesaving tool in her car designed to cut through a seat belt if she gets trapped. She keeps it in the trunk.
They Walk Among Us!
My friends and I were on a beer run and noticed that the cases were discounted 10%. Since it was a big party, we bought 2 cases. The cashier multiplied 2 times 10% and gave us a 20% discount.
They Walk Among Us!
I couldn't find my luggage at the airport baggage area, so I went to the lost luggage office and told the woman there that my bags never showed up. She smiled and told me not to worry because she was a trained professional and I was in good hands. 'Now,' she asked me, has your plane arrived yet?'
They Walk Among Us!
While working at a pizza parlor I observed a man ordering a small pizza to go He appeared to be alone and the cook asked him if he would like it cut into 4 pieces or 6. He thought about it for some time before responding. 'Just cut it into 4 pieces; I don't think I'm hungry enough to eat 6 pieces.'Yep, They Walk Among Us!
They Walk Among Us,
and they Reproduce,
and Worst of all
.....they Vote!
0 -
Hi everybody. I've been reading daily trying to keep up. I haven't posted much....I always seem to think that everyone writes/speaks so well. Following LJ and Suze--wishing you both strength. Titan-lovely pics of your daughters wedding. MBJ--good luck with your move to Kentucky. Heidi--enjoying your photos and stories about your trip and of course always get a laugh at some of the goofy, funny things you post! And to all I missed---appreciate you all for keeping this thread going so strong. You all have shared your knowledge and true compassion.
Navy
0 -
bak94, I think the waiting 2 weeks without touching it is an amazing idea. Making a decision after the two weeks is up, is really a very good idea, thanks so much. I will try that. And the neck and pain around the ear/head, could be blood pressure eh? Never thought of that. I will go home, check my blood pressure, which has always been the one good thing in my body, always in the 120/80 range or sometimes even lower and the doctors love that. But who knows?
Frankly, I am not worrying. I actually feel sort of guilty to not be taking any action. I feel like I am betraying myself by not doing anything about it, although I have done everything possible. Does anyone else ever feel like that? It is as if, I will have this guilt inside me which will say, you could have had a biopsy but you didn't. You could have seen the doctor about your headache, but you didn't, you second guessed it, etc. etc. This is a horrible way to live, isn't it?
The surgeon explained to me that MRI detects cancer, through a metabolic process, not like a photograph which is imaging. I have a deformity and during testing as I lie down, the lump area gets hidden. I guess I should be at peace knowing that nothing shows on the MRI.
MBJ - Wishing you fun and excitement with your new move, new area, new life!
Suze - Enjoy every moment of your dinner tonight. I am reading all your posts and continue to send my best wishes, dear girl.
Luah - I read all your posts with a lot of interest. Lots of wisdom in them. Thank you.
All others - I love you all strong, amazing women. Keep it up!
0 -
Ladies- thanks so much for the advice. I'm going to request a scan, what the hell! Lovelyface- I agree, it can be so frustrating to get different information from your caregivers. I try to collect all of the information and then make an educated guess based on what they've said and what I've read. I agree, if a biopsy will give you peace of mind I think you should get it done. I've been having headaches too, but my Dr. said that's not a common side effect from chemo or rads, and if it persists to see my family doc (blah!). So hard not to worry about met. 0
-
Mac Fry liked this one....
0 -
Another good one...
WHY MEN SHOULDN'T OWN ACTION FIGURES:
0 -
Well..if we aren't all laughing are *s**s off at the above something is definitely wrong with us besides BC...my DH wonders how I can go on BCO and laugh...ha ha ha...I love the jokes Heidi! You are the BEST!
Lovelyface..after what we have been or going through it's so hard to have a doc say it's nothing..I don't like your dr. saying it takes cancer 3-5 years to develop..dang it...I don't think TN takes that long...aren't we called "interval" cancer after all...I dunno..maybe you should raise some h**ll..it is YOUR life and YOUR body...
I whine about everything when I have a mammogram..I just don't understand why I can't know NOW...I don't care about procedure..blah blah blah..the technology is there..TELL ME!
LJ..the healer...I like it......I feel too that you are going to kick this..
0 -
HOSPITAL CHART BLOOPERS
(Actual writings from hospital charts.)
1. The patient refused autopsy.
2. The patient has no previous history of suicides.
3. Patient has left white blood cells at another hospital.
4. She has no rigours or shaking chills, but her husband states
she was very hot in bed last night.
5. Patient has chest pain if she lies on her left side for over a year.
6. On the second day the knee was better, and on the third day it disappeared.
7. The patient is tearful and crying constantly. She also appears to be depressed.
8. The patient has been depressed since she began seeing me in 1993.
9. Discharge status: Alive but without permission.
10. Healthy appearing decrepit 69-year old male, mentally alert but forgetful
11. Patient had waffles for breakfast and anorexia for lunch.
12. She is numb from her toes down.
13. While in ER , she was examined, x-rated and sent home.
14. The skin was moist and dry.
15. Occasional, constant infrequent headaches.
16. Patient was alert and unresponsive.
17. Rectal examination revealed a normal size thyroid.
18. She stated that she had been constipated for most of her life,
until she got a divorce.
19. I saw your patient today, who is still under our car for physical therapy.
20. Both breasts are equal and reactive to light and accommodation.
21. Examination of genitalia reveals that he is circus sized.
22. The lab test indicated abnormal lover function.
23. Skin: somewhat pale but present.
24. The pelvic exam will be done later on the floor.
25. Patient has two teenage children, but no other abnormalities.0 -
Heidi - you are hiliarious...where do you get this constant stream of great jokes?
LauraJane and Suze - your posts are so uplifting and your attitudes are contagious. I want you to know how much you mean to us on this thread.
Lovelyface - get it checked if you can pursuade your doctors...for your peace of mind.
Navy - nice to hear from you.
I haven't had much to post lately. Had a check up with my GP last week and all was fine. Though my latest bloodwork showed my vitamin D levels at "low normal" (92 nmol/L) despite supplementation. I figured it would have been much higher. I need to do more research on this matter. Anybody have any insights?
0 -
Hello ladies, I hope you are doing well. My orig triple Neg tumor was in 2000. I moved to a new surgeon at another hospital nearby about six years ago who prescribed yearly breast MRI's. Well, I did not have one in 2010 because my insurance denied it and denied when my new surgeon and I both appealed it. Then I learned from a BC survivor that insurance companies are now paying for long term triple Neg survivors to have breast MRI's. Sure enough, the breast MRI showed that I had a new small tumor (known now to be a new primary--dif type of triple Neg). I think not doing the tumor markers is probably fine--my numbers were fine even with the new tumor--but maybe that reflected that I didn't have mets. So what they are saying about scans causing undo stress is foolish. I am very glad that my MO and surgeon are proactive--I am reassured to know that the scan is OK--except for the time that the other hospital read my bone scan as bone mets in 2009. I learned this through the mail (Did I freak out? Yes!). My wonderful MO asked me to pick up the film and saw me right away. He said, "This does not look like mets to the bone to me. It looks like Paget's Disease of the BONE. Go downstairs and have a chest Xray and I'll show this to my "bone guy.". Sure enough-- the diagnosis was early Paget's Disease of the BONE! My doc calmed me down and I didn't even worry while the final diagnosis was made. Sorry to be so long-winded but I just wanted to share that the very expensive Breast MRI that I had in March probably saved my life! Take care, all. (Note: I know that there is a type of BC that is called Paget's Disease of the Breast. If you look Paget up, he discovered a whole lot of diseases--what a remarkable man!)
0 -
Heidi: Oh. just too funny. Thanks for the morning laugh!
Sugar: No good insights here, except that your result seems on the positive side. I haven't had my vit D levels checked since I was in chemo. At the time I was 79 and the report said: "> 75 Considered optimal for fracture prevention." Routinely, my BS recommends (and GP supports) 2000 units/day and I've been taking that as liquid D3; unfortunately I haven't had followup testing, so I'm not sure how I'm trending.
flautalee: Sorry you're dealing with this again, but thanks for posting. I've been putting off my call to onc pressing for an MRI (in addition to annual mammo); apprently there are some new guidelines I may not meet....I am resolved to make my case after reading your experience!
0 -
1st conversation with MO yesterday..."good news, your 3rd HER2 test shows irregular RNA indicating Her2 positive and we are switching you to Herceptin...no more red devil or neulasta...no more mega nasty SE's....no, I talked to the pathologist and he says it is positive and I'm not sure why someone told you negative."
2nd conversation 30 minutes latere while pre-meds were running...."I'm not very happy right now, I feel terrible and so does the pathologist. He red the report wrong, I just looked at the report from the testing facility and you are HER2-, soo sorry we got your hopes up. I feel terrible...thanks for being such a good sport."
I don't want to be a good sport!! I want to kick, scream and cry and not feel like I've been run over by a truck!! oh well....at least I still have my TN sisters. 0 -
Heidi, thanks for the continuous supply of good laughs! We all need that!
Oh Lee Ann, that's unbelievable. So sorry you had to go through that! I know mistakes happen but shouldn't someone check these things out before communicating to the patient?
Sending {{{HUGS}} to all! I don't post often on here but do read the thread regularly.
0 -
Lee Ann (hugs) I know that is so hard to hear one thing and then 30 min later hear another.
0 -
Is there anyone on this TNS board that did a chemo schedule of 3 weeks between infusions? The ONC my Mom is using initially told her Dose Dense A/C every 2 weeks, but has now moved her to a 3 week interval. The ONC hasn't explained the change in plan but her counts went down and they delayed her second infusion. Just wondering about this since ONC had told us she needed to hit it hard and fast.
What can she do when her counts get low to help herself? Are there diet modifications that help?
Mom doesn't post much, but she really enjoys reading this board. Thanks for sharing.
0 -
Heidi - that last photo - OMFG!!! My DH was laughing his butt off!!! I need to get that on Facebook.
Lovelyface - I think the 2-week advice is spot-on. Take a mental break from it all for two weeks, giving yourself permission to think about it at the end of that time. If you are still concerned, then you can push for the biopsy. Sometimes if we "allow" ourselves to take a break, it is easier to do knowing that we then have "permission" to go back to worrying, kwim?
Sugar - your Vitamin D actually sounds on the higher side? My MO wants mine around 60-70, but too high can be problematic also... Maybe that is a different way of reading the numbers?
flautalee - what a relief that it wasn't mets!!! That must have been scary!
LeeAnn - how awful!! I mean, truly awful. To go from one extreme to the other had to be an emotional skydive! Sometimes you just want to punch these people. It isn't their "fault," but ugh it would feel good.
westieluv - if you don't mind my asking, how old is your mother? It sounds like her MO decided the 3-week schedule would be easier for her to tolerate, and maybe then she won't have to skip treatments. I know dose-dense is supposed to be the "gold standard," but the older regimens are still very effective. I think balancing your mom's health and keeping her strong to fight the cancer might be where the doctor is going. But he should most definitely explain that to her! What counts are giving her trouble? Did she have a Neulasta shot after the first round? If her WBCs tank, that would be an obvious solution to keep her on dose-dense scheduling. There isn't much else that can be done to boost those unfortunately. For RBCs, the obvious iron-rich foods can help. And even though it is just saline, I found extra bags of fluids a week after treatment really helped me.
~~~~
Second treatment last night, and still feeling like a million bucks. This just can't be that easy, can it? I am getting paranoid that I'm not getting any actual drugs!!!
On a positive note, on another site a fellow TN just had amazing first scans while doing the Abraxane/Tig! I am crazy - because I definitely don't want any progression, but darnit I want that drug!!! I am going to push for an early scan, and I think if I am even stable, my MO might be able to justify moving me to the Tig...
Good note - I really feel good today! So I was able to spend the whole afternoon being a "mom" - making a cake, helping my boys with their homework, cooking dinner. My head is finally clearing, I'm tired but not falling over on my feet, and I just feel - good!
0 -
What is Causing Drug Shortages?
2011 Oct 20, Patrick Cobb, MD; Ted Okon
Dr. Patrick Cobb is immediate past President of the Community Oncology Alliance and Chairman of the COA Policy Committee and Ted Okon is Executive Director, Community Oncology Alliance. View profiles of Dr. Cobb and Mr. Okon. Drug shortages have hit Capitol Hill. Not only are lawmakers perplexed, but also the Obama Administration is trying to figure out what has precipitated and is fueling the shortages. The media reports have exploded in recent weeks with stories from around the country about this growing crisis. Treatment delays are occurring and, in some cases, oncologists are forced to change patients’ treatment, often in midcourse, because key cancer-fighting drugs cannot be procured.The drug shortage situation is very complicated; however, the root cause is not. The problem is grounded in economics and goes back to the way the government fundamentally changed Medicare reimbursement for cancer care in 2003.Step back for a minute and look at cancer care—it is in crisis. Community treatment facilities are closing and the “market” for cancer care is consolidating, especially as hospitals acquire practices and hire oncologists. Now, we are experiencing an accelerating shortage of cancer drugs —most low cost, but critical injectable generics. The University of Utah Drug Information Services reports that in 2006 there were 3 anti-neoplastic drugs in short supply; in 2010, 23 were in short supply. A series of events, starting with the Medicare Modernization Act (MMA) of 2003, have altered the oncology environment, and we are seeing the “unintended consequences” of public policy play out in drug shortages.Like any system, cancer care delivery is its own “ecosystem.” Over the past 40 years, we have witnessed an evolution of that ecosystem from largely academic–center based inpatient care to community-based, outpatient care. The evolution was aided by a push from the government in the establishment of diagnostic-related groups (DRGs), in part to use payment reform to force medical care out of the hospital inpatient setting. With the availability of anti-cancer agents with shorter infusion times and supportive care therapy, academically trained oncologists established efficient, outpatient facilities to deliver high-quality cancer care in patients’ own communities. In the process, the United States led the way in developing the cancer care treatment model for the rest of the world. Outcomes, including increased cancer survival rates, were proof of the effectiveness of the system.Providers Feel the First Impact of the Shock to the Delivery SystemIn 2003, the government introduced a major shock to the cancer care delivery ecosystem by fundamentally changing the way Medicare paid for drugs. Acting on a belief that oncologists were profiting from the difference between average wholesale price (AWP) set by the manufacturer — Medicare reimbursed for drugs at 95% of AWP — and the actual sale price of a drug, Congress devised a new payment system. With the passage of the MMA, gone was the AWP-based Medicare drug reimbursement system that Congress had created and, in its place, was a new system, which policymakers devised based on the “average sales price” (ASP) of a drug. Not only was the new ASP-based system a theory that had never been tested or piloted, but also it is fraught with problems. First, it requires manufacturers, who are responsible for reporting ASPs to the government, to include manufacturer-to-distributor prompt pay discounts in the calculation of ASPs. Because these discounts are financing terms that do not get passed on to oncology practices, their inclusion has the effect of artificially lowering Medicare drug reimbursement. Also, there is a perpetual 6-month lag in updating the ASP-based payment rates. This adversely impacts oncology practices, which, in effect, subsidize the Medicare system by constantly absorbing price increases that are not reflected in reimbursement rates in a timely fashion.The changes to Medicare reimbursement for cancer care in the MMA were also intended to better balance payments for drugs and services. While drug reimbursement was drastically reduced with the new ASP-based system, the Centers for Medicare & Medicaid Services (CMS) never carried out the intent of the law by paying for essential, but unreimbursed services, such as treatment planning and survivorship planning. Although CMS put in place two demonstration projects to provide stop-gap funding on the services side, when these expired, by 2007 the payment system was unbalanced. This shock to the oncology care delivery ecosystem cascaded as CMS introduced further payment cuts as part of its annual fee-schedule update process. A study by Avalere Health found that, by 2008, Medicare covered only 57% of the cost for just the services—drugs excluded—of providing chemotherapy infusion.As more private insurers adopted the new government ASP-based system and ratcheted down reimbursement, community oncology practices—delivering treatment to 4 out of 5 Americans with cancer—started feeling the pressures to survive. As of March 2011, the Community Oncology Alliance had tracked over 1000 community oncology practices impacted by the shock that the government introduced, including 199 treatment facilities that were closed over the past 3½ years, 369 practices in financial difficulty, and 315 practices that have merged with hospitals. In fact, mergers with hospitals were up over 40% during the most recent 6-month reporting period. Hospitals are offering the promise of financial stability to oncologists in private practice facing declining reimbursement and the uncertainty of health care reform, as well as access to 340B drug discounts. The government’s 340B program, which provides deep drug discounts to hospitals and other institutions treating a disproportionate share of low-income Medicare/Medicaid and uninsured patients, has grown since MMA passage. The Health Resources and Services Administration reports that there were 578 340B sites in 2004, which exploded to 2650 in 2010.Generic Drug Manufacturers Next to Feel the Shock to the SystemThe old AWP-based reimbursement system allowed generic drug manufacturers to compete on the margins they established by setting a drug’s AWP, which was the basis for Medicare drug reimbursement rates, and then selling the drug at a discounted rate to that AWP. The replacement ASP-based system changed the generic drug manufacturers’ means of competing to solely on actual sales price, versus on margin. That and the 6-month lag in updating Medicare reimbursement rates—requiring cancer practices to subsidize Medicare for manufacturer price increases—has resulted in a new system that is effectively price capped. This can be seen in the steady downward pricing pressure on most generic drugs, which has been obvious since 2005, the year that the ASP-based system was implemented. We have examined the ASPs for some of the top cancer drugs in short supply, and, from 2005 through 2011, have seen close to a 50% drop in prices.Generic manufacturers have felt additional pricing pressure from an increasing volume of 340B discounts, which manufacturers are required to extend to 340B purchasers. As more oncology practices under reimbursement pressures have been acquired by hospitals eligible for 340B pricing, the volume of these discounts have increased. Furthermore, Medicaid rebates exert further downward pricing pressure on manufacturers.Consolidating Manufacturing Market Magnifies Every HiccupAlthough, on the surface, declining prices are a positive for payers and patients, the problem is that many cancer injectable generics have reached severely low prices. You have to wonder if manufacturing a $1 sterile injectable cancer drug is economically viable in the long run. In a market that is highly regulated, both in terms of pricing and manufacturing, normal market forces are not in effect. Faced with the prospect of diminishing returns from low-priced, discounted, and rebated drugs, the incentive to stay in the market is reduced. This has led to fewer manufacturers producing these products. As a result, any manufacturing, regulatory, or quality problem that shuts down a production line has a magnified impact on the supply of product. Yes, more manufacturing problems appear to be occurring; but, they are more pronounced in a collapsing manufacturing market. Furthermore, as often happens when products are scarce, secondary middlemen outside the established distribution chain are hoarding available drugs in short supply and reselling them at exorbitantly inflated prices.Solutions?Members of Congress on both sides of the aisle are looking for solutions. Legislation in the Senate and House looks to strengthen the warning requirements when manufacturing problems are encountered or producers simply decide to stop supplying product. Additionally, members want to call hoarders on the congressional carpet and legislate constraints on scalping. However, although useful, these efforts are aimed at symptoms and not the underlying disease.The cancer care delivery system ecosystem has been severely damaged, and solutions have to be found to both stabilize the provider market and provide incentives to manufacturers. (More on solutions in the next commentary.) It is ironic, and very alarming, that, as this crisis unfolds, proposals floating around Capitol Hill as part of the deficit-control process would significantly worsen the problem. These include further cutting Medicare drug reimbursement from ASP + 6% to ASP + 3%, as well as extracting additional Medicaid-type rebates from manufacturers.In the face of the crisis, the ecosystem is getting even more unbalanced as demand for cancer care is increasing with growing incidence of the disease and is outstripping the supply of oncology providers. This is a time when we need enlightened public policy that will put our nation’s cancer care delivery system back in balance so that Americans now and generations to come can continue to receive the world’s best cancer care.0 -
Hi Suze - the reason my Vitamin D score might seem high is because in Canada we measure in nmol/L...when converted to ng/m, which is what I think is the unit of measure in the US, mine is 35 ng/m, which is low normal. The normal range for nmol/L is wide 70 - 210, or something like that. Not sure how I can get it up higher unless I move to Fiji or Hawaii..lol
0 -
Hey Ladies, I have a question, went to the radioligist today, and he almost told me my onco type score before I stopped him, I'm just not ready to know, I just want to eat and exercise and take care of myself, I don't think I need to know the score. Anyway he did mention it was "quite high" I was just wondering if maybe most TN's would have high scores and this isn't something I should freak out about. Sorry, I do suffer from anxiety and this is just really bugging me.
I forgot to add, something good that happened today, We've booked our "end of treatment" trip to Paris and Rome tonight.
0 -
Sugar - d'oh! Yea, that makes sense
. I can tell you that I've been taking 4000 mg/day, and it is only slowly rising. I started at 19, and am around 50. I've heard that if you take it with Cal-Mag, it helps absorption, also with a more fatty meal. I haven't tried that yet, those CM pills are just huge!McCrimmon - oncotype scores are not useful for TN, as ours will always be high given the grade/aggressiveness of the tumor. It is only useful for estrogen positive tumors. Please don't let it bother you, your first instinct was correct. In fact, I'm surprised your doctor ran the test! And YAY Paris!!! I love that city. So beautiful
.0
