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Carl
MemberJack,
No my doc and I are now deciding what to do about my spleen that has gotten to the size it is now causing pain in my abdomen.
MemberMaureen,
I went through the same side effects but mine only lasted a week to ten days after the Dacogen treatments, then I started feeling better. Just before the time for the next treatment I felt OK.
My platelet, WBC and RBC counts all went a lot lower after the treatments but gradually went up. I also had 2 units of irridiated/PRBC about a week after the treatments.
There is nothing wrong with waiting another week between treatment to help your body recover, so discuss that with yor Doc.
MemberTerri,
Is his spleen getting enlarged again? That would coincide with platelets being absorbed so fast.
Carl
MemberWell Jack, when I get leukemia they can treat it with some serious chemo. but I’ll have to be in the hospital for a couple of weeks. Then there is no guarantee the chemo. will put me into remission.
But the best I can hope for is remission from the leukemia which will put me again in the MDS category, RAEB-T. Just like a (#@*!) merry go round.
MemberJack,
When I started Dacogen they did a BMB and I had less than 5% blasts and my diagnosis was RA. They did BMB’s every 3rd round. They showed no improvement, then after the last BMB I had 12% blasts and my diagnosis was RAEB2. Sadly, I have since progressed to RAEB-T, transforming to AML.
Memberannie-anne,
I took Dacogen for 7 months and had no problems with swelling or lumps.
Best tell yor Dr. as soon as possible.
MemberJack,
Right now I am just getting transfusions and Aranesp shots. I have tried all the approved meds. except Vidaza and it is similar to Dacogen. Perhaps the researchers will come up with something new and I’ll give it a try.
I’m not a fan of medical trials so I have pretty much ruled those out too.Memberjaxem,
As my signature profile says I went through 7 rounds of Dacogen.
Memberbluej,
I have been to Vanderbilt Cancer Center many times as a secondary check on my local oncologist. They are very good and I would recommend that you go there. But, be sure to take their recommendations as only that, a recommendation, because they can sometimes be very agressive in treating MDS and you may not want to go that route at that time.
Good luck.
MemberStephen,
Glad to hear someone is doing so well on Dacogen. Unfortunately it did not work for me and in fact I got worse by transforming from RA to RAEB II, skipping RAEB I.
MemberM.D.Anderson in Houston is a Center Of Excellence for MDS and I went there for a second opinion back when I was first diagnosed. They are really patient friendly but very busy in the Cancer Center that you will actually go to. I would definately recommmend that you go there but plan on it taking at least two days. Also, if you want to have sedation for a required bone marrow biopsy while you are there you need to make prior arrangements, otherwise it will be with only local anesthesia.
Good luck.
MemberHERE IS THE ARTICLE FROM THE TIMES:
Studies Show Anemia Drugs May Harm Cancer Patients
By ANDREW POLLACK
Published: February 27, 2007New studies are raising questions about whether drugs that have been used by millions of cancer patients might actually be harming them.
The drugs, sold by Amgen, Roche and Johnson & Johnson, are used to treat anemia caused by chemotherapy and meant to reduce the need for blood transfusions and give patients more energy. But the new results suggest that the drugs may make the cancer itself worse.
In the studies, the drugs have generally been used in ways not approved on the labels. And the companies say that, when used according to instructions, the drugs have a long history of safety.
In a statement yesterday, Amgen said it strongly believed its drugs were “safe and effective medicines when used in approved populations consistent with label dosing recommendations.”
Nevertheless, some cancer specialists and securities analysts say the new information may make doctors more cautious in using the drugs, which have combined sales for the three companies exceeding $11 billion and have been heavily promoted through efforts that include television commercials.
“These are drugs that were presumed to be entirely safe, given for supportive care and to improve quality of life,” not to actually treat cancer, said Dr. Eric Winer, director of breast oncology center at the Dana-Farber Cancer Institute in Boston. “So any concern that they could shorten someone’s life are taken quite seriously.”
The Food and Drug Administration is planning to convene an advisory committee meeting to review the products, Dr. Richard Pazdur, the agency’s director for cancer drugs, said in an e-mail message last week alerting cancer doctors to the new findings.
All the drugs are versions of erythropoietin, or Epo, a substance made by the human kidney that increases levels of hemoglobin, the oxygen-carrying component of red blood cells.
Amgen makes Aranesp, with sales of $4.1 billion last year, as well as Epogen, which had sales of $2.5 billion, although Epogen is supposed to be used only to treat anemia in kidney dialysis patients.
Under license from Amgen, Johnson & Johnson sells Procrit in the United States and Eprex abroad, with combined sales last year of $3.2 billion.
Roche’s drugs NeoRecormon and Epogin, now sold only outside the United States, had sales last year of $1.8 billion. But Roche is hoping to enter the American market with a new drug called Cera.
Amgen has the most to lose from any setback because it relies more heavily on the Epo drugs, which account for nearly half its revenue. Amgen’s stock touched above $75 briefly in late January, before word of the negative studies began emerging. The shares closed yesterday at $66.20, down 3 cents.
The new doubts about cancer safety add to those raised recently regarding the drugs’ other major use — to treat anemia caused by kidney disease. A study published in The New England Journal of Medicine in November found that patients treated aggressively with Procrit had a higher risk of heart problems or death than those treated less aggressively.
The run of bad news for cancer treatment started in late January when Amgen announced that in one of its clinical trials, patients getting Aranesp were more likely to die than those getting placebo. The trial was testing the drug in patients whose anemia was caused by the cancer itself, not by chemotherapy.
On Feb. 16, the Cancer Letter, an influential Washington newsletter, reported that a Danish study in patients with head and neck cancer had been stopped early because the cancer seemed to recur more in patients being treated with Aranesp.
Last week, The Journal of Clinical Oncology published a paper online describing a small Canadian trial in lung cancer patients that had been stopped early because those getting Eprex were dying sooner.
And on Friday, Roche said it was suspending patient enrollment in a lung cancer trial comparing its Cera against Amgen’s Aranesp because of apparently greater than expected number of deaths in at least some of the arms of the trial.
It is not known why the drugs cause problems, if they do. It is known that raising hemoglobin levels too high increases the risk of blood clots. And most of these new trials did aim to increase hemoglobin above the levels recommended in the drugs’ labels, though that was not the case with Amgen’s own trial.
But there is some evidence that clots were not the problem in these trials. Rather, some experts say, Epo may spur tumor growth. Some studies suggest that certain tumor cells, such as those in head and neck cancer, have proteins on their surface that bind to Epo. When that happens it sets off a cascade of reactions spurring growth.
“I think there’s enough biologic plausibility to the argument that they can serve as a growth factor for the cancer cell,” said Dr. Jennifer R. Grandis, a professor at the University of Pittsburgh who has done studies of the matter. She said the head and neck cancer practice at her institution does not routinely use Epo and that she would not want it herself.
But Dr. David P. Steensma at the Mayo Clinic, who has reviewed studies of Epo safety, said the existence of Epo receptors on tumors had not been proved because the studies have been flawed. He said that there have been previous studies of the drugs that suggested they actually had a positive effect on survival.
A combined analysis of 57 trials concluded the impact of the drugs on survival was uncertain.
Dr. Steensma said he was still comfortable using the drugs to correct severe anemia, but added, “I think we need to be real careful about going beyond that.”
Concerns about the safety of the drugs for cancer were first raised in 2003 by two studies that showed patients getting Epo had worse outcomes. But some experts said those studies were flawed and not convincing.
MemberLacey,
I have gone through 5 rounds of Dacogen treatments. I start another one next week. The treatments generally go OK and I feel slightly more tired the first week after the treatment ends. All of my blood counts take a nose dive about 10 days after the treatment ends and I have to have a transfusion the second week.
The drug has been reported to put some people into remission, but it is not permanent or a cure for the MDS.
On the good side, I had a BMB after 4 rounds and there was a slight improvement in my bone marrow which I hope will continue with future treaments with the Dacogen. I will get another BMB after my 6th round to see what is happening.
Candy, I lost about 30 pounds last year for no obvious reasons but I have stablilzed now and the Dacogen has not made my weight change any so far. Has your Mom gone to see a Hemo. at MD Anderson? They are a great place to go for MDS, and I went there for a second opinion in 2004.
Good luck to both of your Mom’s on the Dacogen.
MemberChristina,
I receive the 35 mg of Dacogen via IV for 5 days and not by injection. That is the way it was given in the clinical trials and recommended by the drug manufacturer. I too experience lower than my normal counts after about a week of the treatments but they seem to come back in about 3 weeks.
During the off time between treatments I have averaged a transfusion of PRBC about every 10 days to 2 weeks.
Sounds like your Dad may be sensitive to the drug, but I would get a second opinion before restarting it.
MemberED,
I had pretty much the same response but not nearly as bad as your wife’s. I was on the bigger dose and then the smaller dose for a month each and my counts went south as well. I felt TERRIBLE, like I was going to die or something and the Hemo took me off of Revlimid and said that I should not restart it. My counts very slowly rebounded but not to the pre Revlimid levels until I started Dacogen treatments about 8 months later. Be patient and get weekly CBC’s to check her blood counts, especially the RBC/HBG and platelets. I hope this helps.
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