This is an e-mail I received from Singapore.
I am writing on behalf of a neighbour of mine who is suffering from a type of cancer that I have never heard of until now. It is called Myelodysplastic Syndrome (with AML transformation). He went on a clinical trial treatment using a drug called Decitabine.
He has gone for five cycles of the drug now and due for the last one in November 2011. His name is DT.
DT seems to be responding to this treatment because his blood count has gone back to normal. Only problem is this is only short term as the root cause of the problem is in his bone marrow. His doctor is recommending that he goes for a bone marrow transplant, which will cost him SGD 40,000. The current treatment would have cost him SGD 48,000 but since he does not have money, they offered him for free. Apparently in Singapore past clinical trial using this drug indicated that only 1 out of 20 responded positively to this drug. In this trial, he is the only ‘rat’ and seems to work on him.
He does not wish to go for the bone marrow transplant because he does not have the money and doctor told him the procedure is very risky and he may die during the process. So he called me and I am writing to you.
From talking to DT, I think he has poisoned his body from his past occupation working with chemicals in pest control, etc., which may be the cause of MDS.
I am checking your availability this week and next week so I can bring him to see you. He is still weak but at least he can walk now. The last time I saw him four months ago, he was in terrible shape. He is also suffering from psoriasis which was how they discovered his MDS during the psoriasis treatment.
DT came to see us on 11 November 2011. Listen to our conversation that day.
Doctors are men who prescribe medicine of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing ~ Voltaire, author and philosopher, 1760
My first advice to patient, after having seen a doctor and been diagnosed with a disease, is to take care of yourself. Empower yourself with knowledge – meaning you have to do a lot of “homework” and read about your problem yourself. In this way you can understand what your doctor is doing to you. There are times when you need to make your own decisions.
Indeed we are lucky living today in an information technology era. Whatever you want to know can be obtained and answered with a “click of the mouse”. This is exactly what I did with the internet to learn more about the problems faced by this patient. So before we start to ask questions, let us know first.
Psoriasis is an autoimmune chronic disorder of the skin caused by accelerated speed of skin reproduction. It manifests as scaly spots on the skin. One of the major symptoms of psoriasis is joint inflammation. Psoriasis is not a contagious disease.
The treatment for psoriasis includes the use of creams and ointments, oral medicines such as thioguanine, hydroxyurea, cyclosporine, methotrexate, etc. Phototherapy – artificial or natural ultra violet light – is another method used to treat psoriasis.
In spite of a range of options, there is no known cure for this disease. The disease is unpredictable, going through random cycles of improvement and worsening. The effectiveness of psoriasis treatments can be unpredictable. What works well for one person might be ineffective for someone else.
About Myelodysplastic Syndromes (MDS)
MDS is formerly known as preleukemia. The prefix “myelo” means spinal cord or bone marrow, while “dysplastic” means abnormal development. So MDS is a diverse collection of blood-related medical conditions that involve ineffective production of the myeloid class of blood cells when something goes wrong in the bone marrow. The bone marrow does not make enough normal blood cells for the body
Some types of MDS are mild and easily managed, while other types are severe and life-threatening. Mild MDS can grow more severe over time. About one third of patients with MDS may end up with acute myelogenous leukemia (AML). This can happen within months to a few years.
Treatment: There is no cure for MDS. But there are three treatment options.
- Supportive care – patients with low-risk MDS are usually treated with supportive therapy such as blood transfusion, use of blood growth factors and antibiotics to fight infection.
- Chemotherapy – the chemo-drugs used include Lenalidomide (Revlimid), Decitabine (Dacogen), Azacitidine (Vidaza, Mylosar), Cytarabine (Cytosar-U, Tarabine PFS), Idarubicin (Idamycin), and Daunorubicin (Cerubidine, Rubidomycin).
- Bone marrow transplant (BMT) – this is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells.
In the case of this patient, DT first went to the doctor because of his long-standing skin problem, psoriasis. Although he was give a certain cream to apply it did not work for him. This is not unexpected because medical science cannot cure psoriasis.
From psoriasis, the doctors diagnosed DT with MDS – a preleukemia condition. DT was admitted into a chemotherapy clinical trial using the drug, Decitabine or Dacogen. After six cycles of Decitabine his blood parameters became normal. And here we can ask a few questions:
1. Chemotherapy normalised his blood but did it cure his MDS? The answer is probably not. The doctors told him that the disease will recur within a few months if he does not undergo a bone marrow transplantation. So, one dangerous treatment leads to yet another dangerous treatment.
2. Patient had psoriasis and he was treated for MDS. Okay, but did chemotherapy helped his psoriasis? The answer is also no. His psoriasis still persists (see photos).
3. How effective is the chemo-drug Decitabine? And what are the side effects? Let’s go into the website and learn more.
Decitabine is a US-FDA approved drug for treating myelodysplastic syndrome. Before I was able to read the information on this drug from the company’s website, http://www.dacogen.com/, the following Safety Information popped out. I needed to click this “safety button” first before I could get to read the rest of the information in the website: Yes, I have read the DACOGEN Important Safety Information (below).
- Treatment with DACOGEN is associated with neutropenia and thrombocytopenia – neutropenia (87%), thrombocytopenia (85%), febrile neutropenia (23%), and leukopenia (22%).
- DACOGEN may cause fetal harm when administered to a pregnant woman. Men with female partners of childbearing potential should use effective contraception during this time.
- Bone marrow suppression was the most frequent cause of dose reduction, delay, and discontinuation. Six patients had fatal events associated with their underlying disease and myelosuppression (anemia, neutropenia, and thrombocytopenia).
- Of the 83 DACOGEN-treated patients, 8 permanently discontinued therapy for adverse events compared to 1 of 81 patients in the supportive care arm.
- In the single-arm study, hematologic toxicities and infections were the most frequent causes of dose delays and discontinuation. Eight patients had fatal events due to infection and/or bleeding. Nineteen of 99 patients permanently discontinued therapy for adverse events.
- Other commonly occurring reactions include fatigue, pyrexia, nausea, cough, petechiae, constipation, diarrhea, and hyperglycemia.
- Because there are no data on use of DACOGEN in patients with renal or hepatic dysfunction, DACOGEN should be used with caution in these patients.
The following are the side effects of Decitabine:
Low blood counts, Fatigue, Fever, Nausea, Cough, Petechiae, Constipation, Diarrhea, Hyperglycemia , Headache, Difficulty sleeping, Swelling , Low albumin, Low magnesium, Chills, Low potassium, Bruising, Rash, Low sodium, Dizziness, Generalized aches and pains, Cardiac murmur , Poor appetite, Sore throat, Abdominal pain, High bilirubin blood level, High potassium, Mouth sores, Drowsiness, Abnormal liver function blood tests, Confusion, Anxiety, Itching, and Heartburn.
The overall response rate is only 17% consisting of 9% Complete Response (CR) and 8% Partial Response (PR).
That is the message I would like to impart to cancer patients. Before you go into any invasive treatments, read first and know what you are up against. Know the risks and make your decisions accordingly. In cancer treatment, it seems there is no such thing as right or wrong answer. Take your risks and hope for the best.
After enduring the discomforts and “danger” of chemotherapy, DT came out of this experience rather well but the treatment did not solve his problem at all. He still has psoriasis and he was told that without BMT (bone marrow transplantation) he would suffer a recurrence of his MDS. DT did not want to proceed with BMT – in other words he wanted to give up medical treatment.
This is another message I would like patients to think about. Why abandon your medical treatment half way? To achieve medical success DT has to undergo BMT and if he does not do that the purpose of him having chemotherapy earlier becomes meaningless. If you do not wish to proceed with BMT would it be wise for you to undergo chemotherapy in the first place? I have encountered similar situations very often. Patients went to the doctors. They did CT scan, scoping, biopsy, etc. When asked to undergo an operation or chemotherapy, they backed out. It is good to do the CT scan or the scope to know what has gone wrong. But to do a biopsy? There is no need to do a biopsy if you have already decided not to proceed with surgery or chemotherapy or radiotherapy. It is meaningless.
About Bone Marrow Transplantation
Let me be clear. I am not saying DT should undergo BMT after his chemotherapy. I know the risk and danger of such procedure. Let’s have a closer look of what BMT is all about first.
There are three kinds of bone marrow transplants:
- Autologous bone marrow transplant: “Auto” means “self.” Stem cells are removed from you before you receive high-dose chemotherapy or radiation treatment. After these treatments are done, your stems cells are put back in your body.
- Allogeneic bone marrow transplant: “Allo” means “other.” Stem cells are removed from another person, called a donor.
- Umbilical cord blood transplant: Stem cells are removed from a newborn baby’s umbilical cord immediately after being born. The stem cells are stored until they are needed for a transplant.
Before the transplant, myeloablative chemotherapy and / or radiation are given to kill any cancer cells that may be present. This allows new stem cells to grow in the bone marrow. In some cases, reduced intensity (or nonmyeloablative) treatment is done before a BMT. It is hoped that the newly implanted bone marrow will “match” and go to produce healthy cells.
- Infections, which can be very serious
- Bleeding in the lungs, the intestines, brain, and other areas of the body
- Stomach problems, including diarrhea, nausea, and vomiting
- Inflammation and sorenes in the mouth, throat, esophagus, and stomach, called mucositis
- Damage to the kidneys, liver, lungs, and heart
- Early menopause
- Graft failure, which means that the new cells do not settle into the body and start producing stem cells
- Graft-versus-host disease, a condition in which the donor cells attack your own body
- A bone marrow transplant may completely or partially cure your illness.
- Complications or failure of the bone marrow transplant can lead to death.
From my experience, I know of patients who went through BMT and died. And I know of Peter (not real name) who was asked to under a BMT so that he could live ten or more years longer. He refused. Peter was on our herbs and it has been fifteen years now, and Peter is healthy. Click this link to read more, https://cancercaremalaysia.com/2011/09/18/nhl-kidney-cancer-free-after-six-months-on-the-herbs-2/.
But let not my experience influence you. Let us ask the computer these two questions:
- What is the risk of dying while undergoing BTM? There is no clear cut answer. The following are some indirect answers:
- Two- to 5-year survival rates after transplantation plus chemotherapy range from 40 – 80%.
- Complications or failure of the BMT can lead to death (with no percentage given). BMT carries a risk of treatment-related death.
- The high-dose chemotherapy and total body irradiation required for BMT can have serious side effects. Before undergoing BMT, you will be asked to sign a consent form indicating that you have received verbal and written information to understand the risks and benefits of the proposed treatment.
- Organ toxicity — The lungs, liver, and bones are at greatest risk of damage as a result of treatments used with BMT.
- What is the long-term survival of BTM patients?
- Although most were apparently well, survivors at 10 years and 15 years after BMT continued to have an increased risk of death. Causes of death were related to relapse of the underlying cancer, development of a second cancer, chronic GVHD, or transfusion-acquired viral infection.
- In patients who receive an allogeneic BMT as treatment for acute myelogenous or lymphoblastic leukemia, chronic myelogenous leukemia, or aplastic anemia and who are free of their original disease two years later, the disease is probably cured.
- Results of recent studies of allogeneic BMT for CML report long-term survival rates of 55%-80%, with median survival of more than 10 years.
- 3,788 patients had been observed for 10 or more years. The probability of being alive 10 years after HCT was 85%. The chief risk factors for late death included older age and chronic graft-versus-host disease (GVHD). For patients who underwent transplantation for malignancy, relapse was the most common cause of death
Having done all the reading, it is up to cancer patients themselves to make up their minds – to go for BMT or not. At CA Care we always say this, This is your life. It is you and only you, who can decide what you want to do with yourself. Others around you can only help but ultimately it is you and only you who will have to bear the consequences of your decision. So decide wisely.