[Philip Fallacaro]

I just noticed your response on my laptop mail account. I don’t get it on my iPhone anymore and can’t fix it. Anyway I was happy to get the info regarding recuction of iron in a safe way. Is LIFE EXTENSION A WEBSITE? I havent tried to search it yet. I assume the medication is over the counter not requiring a prescription? I will check and try to find where I can buy some and try it. thank you Sherry for noticing this post and remembering me. Phil

[Philip Fallacaro]

I am a male just turned 81. Was in good health until about 4 years ago when my blood counts began to slowly drop into abnormal range. Started being monitored by hematologists suspicious that I had MDS. Two years ago officially diagnosed with “low risk” MDS from bone marrow biopsy. Did not need transfusions. But a year and half ago my anemia got bad enough to require Procrit as trial method of treatment to boost hemoglobin. It’s been working ever since to keep my hemoglobin around 10. And I only need it about once a month now. I can live with that and low white count average 2.8 and platelets ave. 100.
UNFORTUNATELY and unexpectedly I developed iron overload(non hereditary hemochromatosis). Had several bone marrow biopsies that showed no further advance mutations. My iron ferritin and saturation is fairly high and was detected in my liver by MRI. THE iron overload I believe is what’s causing a terrible skin itch with pimple like bumps. The MDS must be the cause somehow of the hemochromatosis, disrupting the normal regulation of intestinal iron iron absorption. If my iron levels increase it can cause organ damage and diabetes, where the heart, liver and kidneys can become diseased and fail. My skin itch and “rash” problem is the first noticeable symptom of iron overload.
I will be seeing a liver specialist who may order a liver biopsy to determine the extent of iron presence and any liver disease. The problem is getting the iron out of my system. I can’t give blood because I’m anemic. If I get treated with Chelation it can potentially kill me with its many side affects, one of which is its affect on bone marrow and lowering of blood counts. But it’s probably the only option I have other than carefully controlling my diet to reduce iron intake. Any treatment I elect to allow will depend on the findings of the liver biopsy and an evaluation of the iron potential for organ damage. I hate the body itch. No ointments or antihistamines help. But if I have to live with it and not chance risky Chelation therapy, I just might have to.
So my advice to your delema about treatment options, I would start with PROCRIT injections as needed to boost your hemoglobin. It’s worked for me for at least two years with fewer injects recently. My hematologists says she has patients that are on it for many years. VIDAZA can be a risky treatment that you may not need. The hemochromatosis is a real danger. If your hemoglobin is high enough, giving blood is the most efficient method of removing excess iron.
Read up and research any treatment recommended by your doctors before it’s given to you. Get second opinions too.
Good luck, Phil

[Philip Fallacaro]

If you do an internet search for “treatments for low platelets” you will find several FDA approved prescription pill form medications on the market. the choice will depend on the type of thrombocytopenia the person has. And they all have some degree of side effects, some of which may cause lowering of othe blood factors. An experienced hematologist very familiar with MDS should be able to offer you treatment options other than transfusions. The medications may be expensive, as are blood transfusions. If you do have choices, check with your insurance company to see if the drug you choose is covered. Keep researching for treatment options and discuss your findings with your hematologist. A bone marrow biopsy may be able to determine the type and reason for low platelet count, and help decide best treatment options.
Phil Fallacaro, Fair Lawn NJ I currently have MDS with all three blood cell counts on low side: white, red, and platelets. Ive been getting Procrit injections every two weeks to keep my hemoglobin from falling too low. I haven’t had any blood transfusions for the three years since MDS low risk diagnosis was discovered. I hope you get a response from someone taking a medication for low platelets and learn about the drug they are taking and it’s side effects. Best wishes for a resolution of low platelet problem.

[Philip Fallacaro]

If you are transfusion dependent, you may have developed iron overload. In which case the liver and spleen are affected by excess iron storage.

[Philip Fallacaro]

You definitely need to know the state of your MDS. a reputable hematologists sshould do a bone marrow biopsy and bone marrow specimens sent out to a reputable lab that can elaborate the type and classification of your MDS.
you mentioned that you have had iron deficiency anemia, low counts of red and white cells, along with several other blood issues.
I’m 80 and have been diagnosed with low risk form of it where red and white cell counts are low as well as hemoglobin, currently at 10 with Procrit shots every two weeks to help increase red cell production. I’m interested to know if you have ever had persistent body itching, on ankles, arms and back in particular. It may be related to iron ferritin levels in the blood. But my doctors, dermatologist, primary and hematologists can’t figure what’s causing it. If by any chance you have had an itch problem in the past or present, that would help me determine what tests to be done related to iron in the blood.
Your bleeding may be related to medications you have taken now or in the past. Research those medications and their INTERACTIONS WITH EACH OTHER, since combinations of medications often cause digestive problems related to bleeding.
From your descriptions of low blood counts, you should have had a bone marrow biopsy done by a hematologists months ago to rule out or rule in MDS.
STAY STRONG. you have been through so much. Hopefully your doctors can find the causes of your problems and proposed the safest and most effective treatments.
Phil Fal

[Philip Fallacaro]

to kerry r its interesting that your fathers hemoglobin dropped and lost his appitite just after starting PROCRIT injections. THATS CLOSE TO WHAT HAPPENED TO ME. a week after starting PROCIT my hemoglobin dropped from 9 to 8.4 I was terribly weak and couldn’t eat, like your father. my son so how bad i was and brought me to hospital. a few days went by with many tests but no diagnosis. But doctors at least provided drugs like Maranol and Zofran to reduce nausea and stimulate appitite’t. Hydro-cortisone was also given to me, but I don better and stongert know its function. All Know is that combination of drugs boasted my energy level and appitite. Im just finishing off a diurtic to get rid of water retention. Im feeling and better and stronger.

[Philip Fallacaro]

Just back from hospital with similar situation. was tested a lot. doctors decided to put me on Marinol and hydrocortisone . next day I was eating and regaining strength. MARINOL is the wonder drug to improve appitite and stop nausea. hydrocortisone I must take until I get stabilized. questions: contact phil at philafal@aol.com

[Philip Fallacaro]

From phil Fal re: low risk MDs classified a year ago from bone marrow biopsy. Just had results of recent bone marrow biopsy and not much has changed. IPSS SCORE NOW 1.37 vrs. Last year 1.32
Some blasts (2%)but considered normal. No new mutations from 20q delition and a few others considered associated with AML progression. WBC 3.7 low, RBC low 3.8 Hgb 11.8 low and have not varied too much in this low range over last year. I don’t feel as good as I did 5 years ago before my counts began to decline. But I’m 79 years old and just feel weaker and less motivated to do things I once did. The two Drs. I saw are suggesting VIDAZA TREATMENT. BUT I VIEW IT AS A DANGEROUS CANCER DRUG FOR MY LOW RISK CONDITION AND INDIDT ON WATCH AND WAIT WITH MONTHLY BLOOD MONETERING. IM hoping new safer drugs will be coming out, like Luspatercept, which should be approved by FDA next year based on successful clinical trials positive responses in low risk MDS patients. Being treated with any drug carries it’s risks and side affects. I’m hoping my body has been adjusting to my bone marrow defects and can maintain a viable level of cellularity
Enabling me to retain a reasonable healthy state. Sooner or later new and safer treatments for MDS will be developed(there is big money in it for Pharma companies and doctors who will administer them). I hope we will be around to be “cured” or benefited from these future drugs. In meantime live a healthy lifestyle with exercise, good diet and “clean living”….no alcohol , tobacco or narcotics. Not sure of any benefits of supplements or canabis derivatives— more research needed.

[Philip Fallacaro]

I’m assuming you have had a bone marrow biopsy in which many lab tests are done and can gice you and your doctor a good idea of the specific type of MDS you may have and a classification score number revealing the level of probability of your MDS progressing to AML(leukemia). If you have not had a bone marrow biopsy and are not seeing an oncology hematologist, specializing in MDS, you may not have a definitive diagnosis. It’s possible your illness is just your ITP, which is not curable, but can come and go periodically. Your sudden deficient platelete count swings, causing severe bleeding and probable low hemoglobin, appears to point more toward an ITP condition rather than MDS which usually only slowly manifests itself from gradually diminishing red, white and platelete counts over a course of many months and sometimes years before cetrain symptoms begin to alert a doctor to test for MDS. My suggestion is to get a second Dr.opinion from a hematologist who is very familiar with MDS. The MDS foundation may be able to help you find such a doctor in your area if you contact them and inquire.
You have an advantage of being relatively young and were reasonably healthy before these recent bleeding epesodes, happenning only a few months ago. You will have more treatment options to consider than a much older person and be in a better condition to combat whatever your specific illness turns out to be.
Ask questions and read up on MDS and ITP. Be informed from your own research. And be certain about your diagnosis before agreeing to any serious treatments, like chemotherapy drugs and the like.
I can understand you being worried and confused since you really don’t know for sure what you have and where your condition—-whatever it turns out to be—is heading.
Once you are sure of what your illness is and the nature of its progression or remission, you will have to learn to accept it and do all you can to help yourself get better and stay alive.
Hope things go well for you by getting a conclusive diagnosis and the proper treatments to correct your illness.
Phil Fallacaro email: philafal@aol.com

[Philip Fallacaro]

If your Dr. is a hematologist/oncologist and is testing for possible MDS, the test results should be extensive, including any mutations as well as so many other things. The results should include a score number indicating your risk of progressing to AML. Once you get the results ask your Dr. to explain all that he can to you. Get copy of results and do your own research and get a second opinion before you are offered any treatment options. MDS is very complicated disease and no two cases are ever exactly identical. If your symptoms are not bad and you don’t run the risk of bleeding as in “hemorrhage”,or have other degrading quality of life issues, just keep a periodic check on your blood factors. My bone marrow test results were in a 15 page report and quite comprehensive. Insofar as platelet numbers go, they can swing below and above normal from month to month. Hopefully you may have a temporary condition with a cause that doesnot have to be MDS or bone marrow failure, but a blood abnormality related to some other organic condition. Good luck and learn as much as you can about whatever the tests turn up.
Phil Fal. philafal@aol.com

[Philip Fallacaro]

May 15, Sharon reply. Bone marrow biopsy procedure should not be painful. I was worried about it but very surprised when I had it done. No pain at all during or after the procedure. Assuming the bone marrow sample will be sent to qualified laboratory for analysis and suggestive diagnosis, it will be very informative for your Dr. and yourself. MDS is complicated with so many variations and classifications. But you should take time to research the findings from your personal copy of the report. Make several copies and get second opinion. but unlike my mistake, go to a Dr. thats not in the same area. Because they tend to agree with the original Doctors treatment recommendations. Like you, I am trying to stay away from drug treatments. At present, there doesn’t seem to be any “safe” MDS drugs. Most all can have potentially serious side effects. Curious. What was the diet you were on that kept your blood counts stable for a while? Wish you well. Phil Fal

[Philip Fallacaro]

Reply #36478 was in repsonse to Tam post on April 29. I don’t see any link or connection to the original post. So, in the future I will make note of the original post at the start of my replys.

[Philip Fallacaro]

You have had low blood counts for a very long time with no noticeable negative effects. Can it be that it’s just in your nature(body chemistry) that your counts happen to be low(just out of range of “normal”?
Which makes me wonder what was the basis of your MDS diagnosis? did you have genetic mutations or presence of blasts to suggest MDS. Take a look at your bone marrow biopsy report to see why the report classified you has having MDS. You may be perfectly normal with a blood chemistry that just happens to out of the bell curve range that the medical statisticians consider “abnormal.”
Phil Fal

[Philip Fallacaro]

I have asked a similar question to my hematologist Doctors and they both seem to play down the side effects. But if you research the subject, you will find a broad range of side effects from little to a lot of physically uncomfortable effects plus changes in your blood chemistry, namely lowering of white count and possibly decrease in other critical cells. The hope is the drug will eventually cause the bone marrow to produce cells normally and eliminate blasts(immature white cells that can proliferate as a blood cancer. Speak to several doctors about your concerns. The tructh is, every case and body is unique with MDS, and you will only learn the side effects once you start the treatment. That is the RISK. Can the Vidaza help or possibly hinder your condition?
Currently I am sataying away from the available drugs, hoping my condition stabilizes and gives me some time to consider potentially new, safer more effective drugs that are designed to treat specific categoriy classifications of MDS.

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