The issue is that I plan on making a very long trip out of the country in the spring.  The PN is worse when I can’t either be moving or have my legs up, so I was concerned about taking an extremely long flight.  It might just be best for me to be prepared with some vicodin (someone recommended this).  Once I’m there, I’ll just need a good night’s sleep to recover and all will be well.

If you have any experience with chemo-induced PN, let me know how you handle it.

Subject: Exciting Multiple Myeloma Data at ASH

Message: Hi Beth,
Here are some data highlights from The 50th Annual American Society
of Hematology (ASH) Meeting this week:

• Updated results from the ECOG study evaluating Revlimid plus low-dose dexamethasone in newly diagnosed patients was presented by Dr. Rajkumar in a joint symposium of the American Society of Clinical Oncology and ASH.  The results are the highest 3 year overall survival rates ever reported in this patient group.
• Data presented by Dr. San Miguel showed that relapsed/refractory patients who received continuous treatment with Revlimid and dexamethasone after achieving their best response lived longer and had increased time to disease progression compared to those who discontinued treatment after ten months or less.
• Dr. Lacy presented data which showed that pomalidomide with dexamethasone has promising activity for patients with relapsed/refractory MM.   Results from this ongoing trial showed high remission rates.

Best,
Allison

Unnamed guitar piece

If you want to hear more weird little songs I made up, let me know.

Many Multiple Myeloma patients have been damaged by the high cost of drug treatment and worse some do not receive treatment at all because of cost. The following is a brief summary of how I came to intimately know the drug Thalidomide and the journey it has taken me on.
I was diagnosed early in 2001 at the age of 54 and underwent an Autologous Stem Cell Transplant that summer. The result was fantastic. Life with my family was back to normal and my recovery was so complete I could play hockey, backpack and do physical work as I did pre MM. I was the happiest guy in town.
The cancer slowly gained another foot hold and in January of 2005 I had a second SCT but that one did not work and I was in trouble! My Calgary Oncologist suggested that I try Thalidomde. (In Canada procedures like SCT’s are covered so there is no serious treatment cost to the patients but when it comes to drugs that can be a different matter.)
I clearly remember asking my Oncologist, Dr. Stewart, “What does this drug cost” and he sort of grimaced and said, “it is kind of expensive……… it will cost you around $3000 a month”. I just about fell off my chair and asked him to confirm that this was the same basic thalidomide that caused horrific birth defects back in the 60’s. How in the world could an old drug like that cost thousands of dollars? As it turned out, my Doctor was wrong as the drug cost more that $4,000 per month. Fortunately for me, while I was being treated in the Province of Alberta I am a resident of British Columbia and The British Columbia Cancer Agency was the last Provincial body in Canada to cover the cost of the drug, so my Thalomid was funded. (Due to the escalating cost of the drug the Agency no longer covers Thalomid for new MM patients but does pay for those on the shrinking list that have been grandfathered in)
The price of this drug simply did not make sense to me. I could clearly remember that the gas I pumped in high school, back in 1966, cost 40 cents per gallon and I wondered what did Thalidomide cost then……maybe at most just a few dollars for a prescription.  I contacted the Pharmacy of the B.C. Cancer Agency looking for historical pricing which they could not provide past June of 2000 but what I learned was absolutely stunning and left me with the instant opinion that something was very wrong with this picture. Hence, I committed to do what I could to expose and help correct the situation. I will leave you to form your own conclusions but these are the historical facts.
Note: All prices are in USD and a bottle contains thirty 50 mg. capsules. June 2000: $98.40. January 2002: $210:00. May 2003: $363.00. November 2003: $592.50. April 2005: $898.50. Note: The Cancer Agency does not add a dispensing fee or up charges so the prices quoted above is what the Agency or patients of the Agency paid Celgene for the Drug. Prices increased over 800% in less than five years.
I quickly learned that thalidomide was available in other countries at fractional prices. For example, the drug is currently (January, 2008) available at Serral Laboratories in Mexico for a cost of $90 for 50, 100 mg capsules so a typical 200 mg. dose would costs $3.60 / day and just last week an acquaintance (not an MM sufferer) had a prescription for Thalidomide filled in India and that drug cost her $5.60 for a 200 mg. dose. (Courier and Bank charges included) Compare the 2005 Celgene price for that same dose and you will see it cost $119.30 / day. I wondered if Canadians alone were being charged excessively high prices but learned that people in the United States were also facing the same outlandish costs.
It struck me that the best way to expose the matter was to contact the media. I assumed when the public and elected representatives found out what was going on the proverbial poop would hit the fan. Early in 2005 The Vancouver Sun, The Globe and Mail and my town’s local paper all did excellent articles focusing on the extreme cost of this long Orphaned drug. Global Television sent a crew to my home in Windermere, B.C. and a story aired on Global National evening news. Later CBC regional radio interviewed Health Canada looking for answers. I’m sure the facts presented by the media caused people to shake their heads but nothing changed.
My letters and extensive support materials sent to the former and current Minister of Health expressing concerns about the outrageous pricing received little consideration. Direct questions were not answered and crafted “say nothing” replies were all I got back from Ottawa. The whole effort left me frustrated and a bit cynical but recent events suggest there may be hope for a little justice. This is what we know.
Celgene has been bringing Thalidomide (Thalomid) into Canada under the Special Access Program since 1995. Currently, Health Canada does not have the authority to require the company to make a new drug submission and file a Notice of Compliance. HC has repeatedly encouraged Celgene to do so they have not co-operated. Why not? The answer is clear. If the drug followed the usual channels a new drug submission and NOC would have been filed and without patent protection, a generic form of the drug could be made and competition would bring the price down.
If a drug is patented it comes under the jurisdiction of the Patented Medicine Prices Review Board whether it comes into Canada under SAP or if the Company files a Notice of Compliance, the PMPRB has jurisdiction. Celgene maintained that the PMPRB did not have jurisdiction over SAP drugs but the board ruled on January 21, 2008 that it does have jurisdiction and that has important implications.
Celgene received a patent for the drug on April 4th, 2006.
It seems clear to me that Celgene believes it can charge what ever it wants for the drug and did not want the price reviewed by the Patented Medicine Prices Review Board because that board may determine that the price is too high, according to the board’s Excessive Price Guidelines, and require the company to bring the price down. Also, that board can require a company that has over charged for a drug to refund money to the Crown (government) and that money may in turn, be returned to the Provinces, medical plans and maybe even to individuals. It is curious that the price had been hiked to the current peak level in 2005. Celgene would know of the PMPRB and maybe they thought the board would only look at the drug price post patent date. (April 4, 2006)
In my opinion Celgene has clearly over charged and they deserve to have their finger slapped in a big way. (If readers wish to read the current judgement and related laws I will be pleased to offer directions to online sources.
Companies like Celgene often try to justify profits by claiming that they plow most of their gains back into Research and Development but you know that does not wash. The former CEO Mr. Jackson rode off into the sunset with tens of millions of dollars gained from Celgene stock options.
Celgene discriminates against Cancer patents. They have charged one price for thalidomide when it was used for AIDS but a much higher price when the drug is used for Cancer. The company has been blatant about its discriminatory practices as the follow quotations demonstrate. “When we launched it, it was going to be an AIDS-wasting drug,” says Celgene’s chief executive, John Jackson. “We couldn’t charge more or there would have been demonstrations outside the company.” (When Celgene Corp. got its first drug approved, it priced a 50-milligram capsule at $6) “After new information suggested the drug helped treat MM, Mr. Jackson said he felt justified in increasing the price because the drug had gained value-it appears to help cancer patients in addition to those with AIDS”.  In Canada, and in most places around the world, discrimination is not condoned or accepted.
Please understand, I am very thankful for the drug and one of the many that are living proof  that thalidomide is an effective short term treatment for Myeloma but that does not change the facts of the matter and that is: Celgene has been taking advantage of us by over charging.
Revlimid, the analog drug of thalidomide, is priced much higher compared to Thalomid and again the company charges excessive prices because they can. They seem to see MM patients as a captive market and act without conscience. The truth is MM patients are a captive market and we essentially just have the big bomb drugs, Velcade and Thalidomide/Revlimid for treatment of our disease. Each drug company wants to stay price competitive with the other but usually we associate competition with bargains or at least fair pricing. In this case we have the companies competing to see if they are pricing their drug as high as the other and they talk of market share in their investment literature as if they were selling buttons instead of life extending drugs. What happened to making something that helps people and making a reasonable profit? Keep in mind Celgene simply found a new application for the old drug Thalidomide and while they did have huge expenses to test and gain approvals for the drug this does not justify charging what they do.
People in the United States are being exploited too. I do not exactly understand what gives Celgene the market protection that they enjoy but it seems to boil down to the STEPS program. It took me almost three years to fully understand the whys and the wherefores of the situation in Canada and I expect that the same careful positioning for profit also exists South of the Canadian border. Celgene seems to enjoy unique market protection in New Zealand, Australia and other countries and I do not know exactly why.
So what to do? In Canada it seems clear that we should pressure our elected representative to influence the Supreme Court of Canada to hear the appeal case between the Patented Medicine Pricing Review Board and Celgene. Nine months have passed since it was ruled that the PMPRB had jurisdiction. Celgene appealed that decision and that court case has not even been scheduled. In the mean time Celgene continues to rack up huge profits. I truly hope that President Obama will keep his word and investigate big drug companies. It seems clear to me that Celgene and the case of Thalidomide is a very clear example of how big drug companies take advantage of captive, dependent people. This is the worst form of gouging. To date the Canadian Government has done next to nothing concerning this issue. It is my hope that the new Minister of Health will do something.

Minimal residual disease (MRD) assessment is standard in many hematologic malignancies but is considered investigational in multiple myeloma (MM). We report a prospective analysis of the prognostic importance of MRD detection by multiparameter flow cytometry (MFC) in 295 newly diagnosed MM patients uniformly treated in the GEM2000 protocol VBMCP/VBAD induction plus autologous stem cell transplantation (ASCT).

MRD status by MFC was determined at day 100 after ASCT. Progression-free survival (PFS; median 71 vs 37 months, P < .001) and overall survival (OS; median not reached vs 89 months, P = .002) were longer in patients who were MRD negative versus MRD positive at day 100 after ASCT. Similar prognostic differentiation was seen in 147 patients who achieved immunofixation-negative complete response after ASCT. Moreover, MRD− immunofixation-negative (IFx−) patients and MRD− IFx+ patients had significantly longer PFS than MRD− IFx+ patients. Multivariate analysis identified MRD status by MF Cat day 100 after ASCT as the most important independent prognostic factor for PFS (HR = 3.64, P = .002) and OS (HR = 2.02, P = .02).

Our findings demonstrate the clinical importance of MRD evaluation by MFC, and illustrate the need for further refinement of MM response criteria.

Online support communities for high survival rate cancers contain a greater amount of emotional support content than online support communities for cancers with low survival rates, according to a new study from the U-M Health System (UMHS) and the VA Ann Arbor Healthcare System.

The researchers also found that support communities for low survival rate cancers contain a greater amount of informational support content than online support communities for high survival rate cancers.

“Online communities have become an important resource for individuals seeking emotional and informational social support related to cancer,” says senior author Dr. Caroline Richardson, assistant professor in the Department of Family Medicine at UMHS.

The study — led by Lorraine Buis, a postdoctoral research fellow at the VA Ann Arbor Healthcare System — assessed differences in emotional and informational social support content in online communities for cancers with high and low survival rates.

The researchers also found that, overall, emotional support was more prevalent than informational support across all communities and all types of cancers.

Both emotional and informational support widely is available within online communities for cancer, but not all of these sites are created equally, Buis says.

“When primary care providers refer individuals to online communities for support, they should be aware that there might be differing amounts of support based on the survival rare of a particular cancer,” she says. Buis also explains that not only are such online communities for patients, “but they help family and friends cope with the struggles that cancer presents.”

Until Richardson’s and Buis’s most recent study, there had been no previous research on the influence of patients’ cancer survival rates on social support content within online support communities for cancer.

Participants in this study all were reviewed under the same time period, were online community members who participated in online support communities for four different types of cancer — lung cancer, pancreatic cancer, thyroid cancer and melanoma — and participated in eight different online communities in the investigation.

The study was presented last week at the annual meeting of the North American Primary Care Research Group. In addition to Buis and Richardson, Pamela Whitten of Michigan State University also was an author of the study.

http://www.ur.umich.edu/0809/Nov24_08/25.php?print