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Laural
MemberSometimes patients present with leukemia cutis, an infiltrate of leukemic cells that causes a skin rash. It can sometimes precede the diagnosis of MDS or AML. A skin biopsy is necessary to identify this. The following is a website that addresses this that I found helpful in the past. http://dermatology.cdlib.org/DOJvol8num2/NYUcases/9/9.html
Follow your doctor’s orders and try not to worry too much. Sounds like you have a good doctor who is staying on top of things. Hope the counts stay stable for your Dad.
LauraMemberHi Janet,
My experience with Revlimid was good once I got past the first 3 weeks. My counts dropped at the other end with my platelets and white cells bottoming out after 3 months. But it did work to get me transfusion free for 9 months even after stopping the drug. I had very few side effects otherwise. Hang in there.
LauraMemberIn our area (southwest Ohio), whooping cough has been occurring in adults lately, prompting a booster shot for adults. Typically, it does not get better with antibiotics, so I would tend to agree with Patti that it probably has other causes. But, vaccinations are certainly warranted when your doctor feels your body is ready. We also have a very active viral repiratory illness going around that includes a cough that is non-productive and hangs on for a long time after the illness has passed. Hope you feel better soon.
LauraMemberI tried the Esiak caps for one month (3/day). I did not have any bowel difficulties, but my blood pressure went up significantly. When I stopped the Esiak, my pressure dropped to my normal within a week…so for now the docs have said to leave it out of my daily routine. I still am using Sinugard and Nutribiotic Defense Plus (available at most health food stores) which seem to help my immunities stay up. Even though I work with handicapped children (with plenty of viruses/colds/etc), my general health has continued to hold well.
MemberI found the petition through going to the http://www.cayleeshope.com website, then clicking on the sign the petition link towards the bottom of the page. this is the petition direct link:
http://www.cayleeshope.com/ Hope this works for you.
LauraMemberWe just completed our Light the Night Walk here in Dayton, Ohio. My team, Always Friends, raised $6404 this year due to our Cooking Up A Cure cookbook that we put together and sold. We had a beautiful night for the walk, and had 55 members on our team (including 3 survivors!). Our team was featured in our local paper at http://www.daytondailynews.com/search/content/localnews/columns/daily/0927dale.html if you want to read about the Dayton Walk. The Walk had over 1500 partipants althogether. It was quite a wonderful night!
LauraMemberI have secondary MDS after initial treatment for Acute Lymphocytic Leukemia in 1986. I used Revlimid through a Phase II trial. It helped me to become transfusion independent. I was unable to continue on the drug after a few months as it dropped my white counts, but I have continued to be transfusion independent and my blast cells have stayed below 3% for almost a year now. I had very few side effects while taking the drug besides the white count plummet. Typically for me, once a med can get my red cells going once again, my own body seems to be able to pick up and keep things going on its own for awhile. This is not typical for most people with MDS from what I have seen. I hope you can get into a trial and have favorable results. Good luck.
LauraMemberI don’t know how this will effect the approval process for Revlimid, but this was in the news Thursday. Seems there are always a few more hoops to jump through . . .
9/28/2005 11:15:12 AM – Reuters Health
NEW YORK (Reuters) – A clinical trial of Celgene Corp.’s experimental cancer drug, Revlimid (lenalidomide), has been suspended because of concerns about blood clots, the Wall Street Journal reported on Wednesday.
The suspension comes as the company was awaiting notice from the Food and Drug Administration (FDA) next week on approval of the drug, the newspaper said.
It quoted the principal investigator in the study, S.V. Rajkumar, MD, an oncologist at the Mayo Clinic, as saying he could not comment on how many patients experienced blood clots. But he told the Journal he expected the trial would resume shortly.
The trial of 250 patients is examining Revlimid’s effectiveness, in combination with a steroid, in patients with multiple myeloma.
Celgene declined to comment on the report, the newspaper said.
The Journal cited 2 other people familiar with the study as saying it was suspended when a higher incidence of deep-vein thrombosis was seen in participants.
Trial organizers were concerned that patients were not uniformly taking aspirin, which had been recommended to them. The trial was suspended until the rules were rewritten to mandate the use of aspirin, those close to the trial told the newspaper.
They expect the trial, funded by the National Cancer Institute, to resume in a few weeks.
The suspension of the trial comes at a critical time for Warren, NJ-based Celgene, which is hoping for approval next week of Revlimid for transfusion-dependent anemia in a subset of patients with myelodysplastic syndrome.
The problem with blood clots presents a potential dilemma for the FDA, the Journal said. Even though the company is applying for approval of the drug in myelodysplastic syndrome, doctors expect that once approved, the treatment will be used much more widely in combination with a steroid in patients with multiple myeloma, as in Rajkumar’s trial.
An FDA spokeswoman declined comment, but noted that the agency generally only weighed the risks and benefits of a drug in the disease and patient group for which it was being considered for approval.MemberSandy,
As my MDS is a secondary form due to original treatments for Acute Lymphocytic Leukemia, a SCT has not been seen as a very viable option. I have always opted for the least invasive treatment to keep the disease manageable. Currently, my docs and I are trying to keep the disease in a quiet state. I have very few effects from this disease right now, only occasional energy depletion if I try to do too much for too long. I have been stable for close to 9 months now with no transfusions and no increase in blast cells. I am real glad to see Revlimid nearing approval as this was the last drug I used, and it did a great job getting me independent of transfusions. It will be good to know it is available outside of trials if I should need it again.
LauraMemberSandy,
Citricidal contains grapefruit seed extract, echinacea, astragulus, and a few other things. It is supposed to help with immunity. Sinuguard contains a blend of herbs designed to support the mucous membranes and sinuses. I have used them daily for the past 2 years and have seen a huge decrease in sinus infections and general illness (I work in schools with lots of germy kids). Whereas these supplements did not play a role in getting the MDS into a quiet state, they seem to help keep my immunities working optimally, which in turn helps the MDS stay quiet (my counts seem to go awry when I pick up other minor illnesses). Also rely on daily exercise as often as I can. The supplements are available at the Health Food store in my area, manufactured by NutriBiotic and Enzymatic Therapy respectively.
LauraMemberHi Pauline,
The problem with low platelets is not a clot causing the stroke, but a small bleed in the brain instead. The body has a harder time repairing the small bumps and tears, including those in the brain, as it takes longer to clot. Will be praying for your visit to the neurologist.
LauraMemberHi Sandy!
Urgent QR and Nosebleed QR are available in many drugstores in a powder form. When put onto a bleeding spot or a nosebleed, it forms a clot instantly. It is very helpful for nosebleeds that are from the frontal area of the nose, especially when platelets are low. Also works well for children when they skin a knee or elbow to keep the bleeding minimal.
LauraMemberHi all,
The following came over the internet today! Hopefully the final approval will come very shortly.BETHESDA, Md., Sept 14 (Reuters) – A U.S. advisory panel on Wednesday voted 10-5 to recommend approval of Celgene Corp.’s
Revlimid to treat anemia in patients with potentially fatal blood disorders known as myelodysplastic syndromes. The drug is a new version of Celgene’s Thalomid or thalidomide, and aims to be safer with fewer side effects.
The Food and Drug Administration will make the final decision but usually heeds the advice of its advisory panels.
Laura
MemberThis summary is from the Cleveland Clinic trial posting for this drug:
“Summary: The myelodysplastic syndromes (MDS) are diseases of the bone marrow stem cells that affect primarily older adults, many of whom become dependent on blood product transfusions or develop acute myeloid leukemia. The only potentially curative therapy is bone marrow transplantation, a modality only available to approximately 5% of patients with MDS. Thus, new therapies are needed. This study uses a novel therapeutic, SCIO-469, to prevent the effects of chemicals (cytokines) produced by MDS cells in the bone marrows. These chemicals prevent the growth of normal bone marrow cells, and it is hypothesized that SCIO-469 will allow that growth to occur again. Objectives include evaluating the safety and tolerability of the drug, as well as assessing the efficacy of the drug (as measured by erythroid response, response of other cell lines, and improvement in cytogenetic abnormalities) in patients with the more indolent form of MDS, with goals of demonstrating improvement of red blood cell transfusion needs and an increase in hemoglobin concentration. Patients will be given this oral drug at different doses daily for 16 weeks. Once safety has been demonstrated, a higher-dose arm will be opened and will enroll patients. Patients will continue to receive medication for up to 52 weeks. Previous studies in patients with other conditions have demonstrated improvement symptoms in patients with rheumatologic disorders and in plsam cell concentrations in patients with multiple myeloma. By participating in this national, multi-center Phase I/II trial, we hope to be part of what could be a new treatment paradigm for MDS.”
This trial will be on-going at multiple locations, including Rush Hospital. You can get a more complete listing, including pre-requisites, side effects, and other locations at http://www.clinicaltrials.gov/ct/show/NCT00113893
I am sure your doctor will have lots more to share when you go in. Hope it is successful for both of your relatives.
LauraMemberAs far as I know, the drug is not being given on a compassionate use basis at this time. Hopefully it can get quick approval for treatment of MDS to add another drug to the treatment potentials. I was on a trial of Revimid. It worked very well (I have secondary MDS) but I did have to stop as it effected my platelets and good white cells after a few months. It helped me get transfusion independent and so far, I have remained transfusion independent even though not on the drug. Although I am not in remission, the blast cells have stayed very low and show no signs of increasing to this time. It has been great to be free of transfusions and I think it has given my body time to repair and to fight the blast cells better.
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