BPDCN is a very rare and aggressive lymphoma. There are probably between 200 - 500 diagnosed cases world wide (no specific # found). If it is not found in the Lymph nodes or the bone marrow it will move there and become systemic over time. Periodic Pet/CT scans and bone marrow biopsy's would need to continue to be done in the future.
Treatment depends on whether it is only T cell skin lymphoma or is involved with other organs.
The Leukemia and Lymphoma Society only covers blood cancers.
They are an excellent organization. They give easy to follow stats on the increased survivability among leukemia and lymphoma patients over the last 30 years.
I am told regardless of treatment survival rate would be the same. So a decision must be made by us after we hear the recommendations for treatments.
Click on Comments after reading this first page. You will then see all of the comments and are able to scan and read what you wish at a time. It will give more detailed information.
Ask to subscribe to this blog and you will get updated information in your email box. It is after the latest comment. On right hand bottom corner.
They are an excellent organization. They give easy to follow stats on the increased survivability among leukemia and lymphoma patients over the last 30 years.
I am told regardless of treatment survival rate would be the same. So a decision must be made by us after we hear the recommendations for treatments.
Click on Comments after reading this first page. You will then see all of the comments and are able to scan and read what you wish at a time. It will give more detailed information.
Ask to subscribe to this blog and you will get updated information in your email box. It is after the latest comment. On right hand bottom corner.
Report from Doctor on Impression & Plan
ReplyDeleteBecause this is difficult to explain to you I am going to put some of the most recent findings on this blog. This will be easier than you trying to look it up on the Internet
, which I certainly have done. So often much of it isn’t even me at this point in time.
Hope this will be more clear as to what we are looking at and will try to update this here as we move along.
Excerpt from my most recent written medical report. I am going to Ironwood Cancer & Research Center in Mesa. (There are over 35 Doctors specializing in various forms of Cancer.) This is Just outside our front door almost… North gate less than a mile. Referred to by both my Primary and Dermatologist. Del and I both feel good about the care here.
Here goes Dr’s Report: Impression and Plan
“Dendritic cell plasmacytoid neoplasm involving the skin. This is a very rare form of T-cell lymphoma involving the skin. At the present time, it looks like the only involvement is the skin and there is no evidence of systemic involvement based on the PET/CT scan. This type of neoplasm can affect the bone marrow and therefore, I did request the bone marrow biopsy and aspirate. This rare type of T-cell lymphoma can rapidly involve the system including adenopathy and involvement of the other organs as well as involvement of bone marrow. The course can be very rapid and life expectancy could be as short as a year. Most patients are elderly at mean age between 60-70 years old, although the disease can occur at any age.
There are a few cases that suggest that skin neoplasms that are CD4 and CD56 positive based on flow cytometry originate from the bone marrow and therefore are actually leukemias and involve the skin secondarily. The bone marrow biopsy and aspirate will help us differentiate between a blastic plasmacytoid dendritic cell leukemia causing skin involvement versus a blastic plasmacytoid dendritic cell lymphoma that is involving primarily the skin and not involving the bone marrow. In either case, this is a very aggressive neoplasm and life expectancy could be as short as a year.”
Dr. Monique Chang October 15, 2011
That’s it guys! What can I say?
Sometimes I don’t feel like I am talking about me. I want you to know that I have the Peace of God living inside of me! This is so very unexpected, but how much I have learned about this cancer as well as many other blood cancers. We have been praying for those dealing with cancers and have been overwhelmed by the numbers of people living with this disease in many forms. I was NOT aware of the many different forms out here nor did I now so much about treatments and helps available. It is an education and so amazing.
Read my next blog when you are ready! Prayer Requests
What I want you know is that I ask for your prayers and not just for healing which we know God can and will do if he so desires. What I do want is your prayers that I will remain peaceful and that my husband can do the same. I ask for discernment in what direction to take next. I have always said I would never do chemo or radiation, however, now I want to do as God would want for my life. Jesus is always with me and I feel his presence. I just want what is best and whatever plan he has for me at this point in my life. Ask for that please! I want to be useful NOT just alive and having to be cared for. If that is His desire then I know he has something else for me to do. Jesus know what I want, but I need to know when My work is done!
ReplyDeleteSome of you are aware of the Prayer Chapel we were able to get started in our Church a year ago.. We could use more which would lift the load for those already We have several volunteers who work there on a volunteer basis and have helped to keep it open involved. God has certainly led us in this direction and has been using us here, but there is so much room for more personal involvement. My prayer is Lord Jesus please send us those people who will bless us with their prayers and who care about the needs of so many others. Please God send these People to step up and be blessed as each is willing to serve you in this way!
Also, The Computer classes and the Lo Vision Sig, which I have taught for many years, is in need of people to step up and continue this worthwhile volunteer job. People are able just give them the incentive to step up and help others in need. That is my prayer.
Lo Vision Sig is a special interest group available to those suffering from glaucoma, macular degeneration, Parkinson’s, arthritis, etc. Somebody has an interest in continuing this worthwhile service to Seniors here at home. Please Pray that God will open the eyes of those who would give of themselves to fulfill this need in our own neighborhood.
Judy - I'm praying for you and for Del. You are such an awesome woman of God and have always been my mentor and strength. It's no surprise to me that with all of this you are seeking help for the Prayer Chapel and for the Computer Class. You call me when you feel up to it. Until then I will keep you in my prayers. Love always my dear friend
ReplyDeleteThank you for reaching out to the Information Resource Center (IRC) of The Leukemia and Lymphoma Society (LLS) through your Email regarding your recent diagnosis with a Blastic Plasmacytoid Dendritic cell Neoplasm (PBDCN) and your request for information.
ReplyDeleteYou raise important questions about your illness and it is important to discuss all of your concerns with a physician (Hematologist/Oncologist) that has clinical experience, if possible, in treating in this rare blood cancer.
Our organization has the following summary material about BPDCN that may begin to address some of your questions and can assist you in initiating a discussion with an experienced physician.
Blastic plasmacytoid dendritic cell neoplasm (BPDCN), used to be categorized by many physicians as a blastic NK cell lymphoma which is a rare typically aggressive blood cancer involving skin (sometimes not), bone marrow, and lymph nodes. It does not appear to be like a cutaneous t-cell lymphoma (CTCL) as it is typically a more aggressive illness than CTCL which is a more slow moving lymphoma.
The most common age at diagnosis is beyond 60 years, BPDCN primarily affects elderly patients. It appears that many patients are treated with aggressive chemotherapy that is similar to Acute Myeloid Leukemia. Sometimes reduced-intensity conditioning (chemotherapy) alloSCT from unrelated donors is feasible and seems to be effective in elderly patients with BPDCN.
The option for an Allogeneic Stem cell Transplant for patients like yourself over 70 is a serious discussion that should involve an experienced Hematologist or comprehensive cancer center given the aggressive nature of the chemotherapy.
It is important to keep in mind that everyone responds differently to treatment and how a patient may do depends on many factors including, but not exclusive to, age of individual, stage, response to treatment, overall health.
Every case and every person is different. One of the most important aspects of this whole process is to make sure you get the proper care you need and know that your doc is available to assist in any way he/she can work out.
Please discuss all of the aforementioned material with a physician.
When someone is in need of the most experienced clinician or expert opinion for rare blood cancers in the USA, LLS is aware of the National Cancer Institute's Comprehensive Cancer Centers listing. These are the best facilities for the blood cancers. Click below for a listing by state: www.lls.org/cancercenters
The list is arranged by state with the address, phone, fax, and Website link. It also indicates the designation as a Comprehensive Cancer Center, Clinical Cancer Center, or Cancer Center. This listing includes the most prominent centers in the USA. Your family would need to contact the Hematology/Oncology Department at these centers.
If you need further guidance, we encourage you to call our toll-free number at 1-800-955-4572where an Information Specialist can learn more about your request and better able to respond to your concerns. You can speak directly with an Information Specialist between the hours of 9am and 6pm EST or access our Web site at www.LLS.org
Sincerely,
:: Ed Ciborowski, LCSW, MLIS | Senior Information Specialist
:: The Leukemia & Lymphoma Society | 1311 Mamaroneck Avenue, White Plains NY, 10605
:: Information Resource Center: 1-800-955-4572
From a PDF file Journal
ReplyDeleteclosing statement.
Despite the apparently indolent clinical presentation,
the course is aggressive and the
median survival is approximately 12-14
months based on several series.6,8, 15,19,21
At present, there is no consensus for optimal
treatment of BPDCN. With intensive therapy
for acute leukemia the rate of sustained complete
remission increases, but only myeloablative
treatment with allogenic bone marrow during the first remission resulted in chance of long term survival. 21,31
Hello all! Right now I am enjoying and thankful for my life everyday. I look forward to serving Him (My God) on this earth as long as I have life in me. Each day He shows me something He wants me to do. With God's help I will do the best I can to be there for others.
ReplyDeleteIf any of you are aware of where I might use the talents God has given to me, please suggest to me so I might seriously consider another opportunity.
Dear Ms. Carstens,
ReplyDeleteThank you for reaching out to the Information Resource Center at the Leukemia & Lymphoma Society (LLS) through your recent e-mail regarding your diagnosis of blastic plasmacytoid dendritic cell neoplasm (BPDCN) and your question about treatment options.
On behalf of the LLS I would like to extend our caring concern to you.
As you know, your diagnosis, which used to be called blastic NK-cell neoplasm, is rare and, until recently, the prognosis has been very poor. Presently, the only treatment option which offers hope of durable remissions is a stem cell transplant. In younger patients, the treatment includes a myeloablative (high-dose) regimen followed by allogeneic (i.e. using donor cells) stem cell transplant: http://www.ncbi.nlm.nih.gov/pubmed/20697854 . You indicate that you were told that you would not be a good candidate for a transplant, but do not elaborate on the reasons. Be aware that some transplant centers will accept patients up to the age of 70 if they are in otherwise good health. I enclose the link to the abstract of an article on stem cell transplant with reduced-intensity conditioning chemotherapy, which is obviously less toxic than myeloablative chemotherapy, for BPDCN: http://www.ncbi.nlm.nih.gov/pubmed/21215813
Allogeneic stem cell transplant obviously has risks (some patients do not survive the transplant, others have significant long-term health issues stemming from graft-versus-host disease), and is not a guarantee of cure; some patients relapse after stem cell transplant. The decision to proceed with this type of treatment is a difficult one to make. If you decide that you want to explore this option, we would suggest that you contact some of the more experienced transplant centers in the US (Fred Hutchinson Cancer Center in Seattle, MD Anderson Cancer Center in Houston, TX, City of Hope, Memorial-Sloan-Kettering Hospital in NYC), and, if possible, that you enroll in a clinical trial, as this would give you the most advanced treatment options.
Of interest, this article suggests that lenalidomide, an oral drug approved for the treatment of other blood cancers, may have a therapeutic effect, as evidenced on mouse models: http://www.ncbi.nlm.nih.gov/pubmed/21856771
To learn more about our programs and services, please contact Jeff Zetino, the Patient Services Manager at our Arizona chapter, at 1-800-568-1372.
If you need further guidance, we encourage you to call our toll-free number at 1-800-955-4572 where an Information Specialist can learn more about your request and be better able to respond to your concerns. You can speak directly with an Information Specialist Monday-Friday, between 9am and 6pm EST.
Sincerely,
:: Beatrice Abetti, LCSW | Information Specialist, Information Resource Center
:: The Leukemia & Lymphoma Society | 1311 Mamaroneck Avenue, White Plains NY, 10605
:: P: 914.821.8923 | F: 914.821.3723 | www.lls.org | abettib@lls.org
:: Information Resource Center: 1-800-955-4572
I have agreed to do radiology on the tumor on my back in hopes of reducing the size and making it easier to cope with. This is to be a noninvasive treatment for 3-5 weeks everyday a shot of r...
ReplyDeleteIt seems to e reducing in size and that is good as the fear they put to me was it would break through the skin and cause more problems. Thank the Lord!
WATCH YOUR MINDSET By Dr. Ed Young
ReplyDeleteLet me ask you something about your mindset: Are you a feeler or a springer? When you get up in the morning, are you a feeler or a springer? I'm a feeler. I don't just jump out of bed and go from zero to sixty in nothing flat. I need to lie still for a little bit and wake up gradually. But Jo Beth is a springer. She wakes up and does not linger. She's up and out before I can get one eye open. Generally, springers go to sleep quickly…like between "good" and "night." That's it. They're down and out in a matter of seconds! But we feelers ease into sleep the same way we ease into waking. Regardless of whether we are feelers or springers, the time to set our minds is when we first wake. At that moment we must turn our thoughts toward God.
If we ignore this opportunity to set our minds on the things of God, we give the devil a foothold, and soon—without our even knowing it—we have set our minds on the flesh. And the mind set on the flesh, Paul tells us, is death. But if we turn our minds and hearts God-ward, and set our thoughts on Him, what a difference it will make in the way we live. Which sounds better to you? A mind set on death, or a mind set on life and peace?
MEMORY VERSE
ROMANS 8:6
For the mind set on the flesh is death; but the mind set on the spirit is life and peace…
There was a time my husband, Del, was a feeler and I was the "springer". I would still like to be the "springer" that I am, but recently I have had to feel more before going into action and staying in action. I seem to be slowing down a bit and still getting done many of the things on my agenda. Have decided if I accomplish one or two things that is good for me right now. I believe I will get that "spring" back again. I won't stop trying.
ReplyDeleteI do have peace completely, and I need strength now to keep going more. God is so good! I want everyone to feel that goodness like I do!
God Bless! Judy
I Need more prayers for recovery from radiation on my back. God is so good. I am still fighting a lot of weeping and bandage changes. The doctor gave me a Silver Cream ointment and some Lidocaine jelly and these help with pain and itching. I am still unable to have the shower water hit my wounds directly but it does feel so good to take a shower.
ReplyDeleteNausea is up and down and digestion is not good so eating is more of a chore. Del fell this week so he could only painfully get around. Between the 2 of us, my legs and his nursing we have made it. He is so much better now and has started a routine again taking care of us.
Tomorrow Hospice Social worker will be here. They are so good and have several things available to help us during this time. Praise God for such wonderful help available to people like me.
The Silver Cream Ointment has helped the burn considerable. The weeping is not as severe and I am able to shower if careful the water does not hit the wound directly. it feels so good!
ReplyDeleteLast week the pain in my neck, mostly left side and just a little on the right side became more severe. ICE was my biggest help in deadening much of the pain. It made it so I could walk around the house outside even. A relief but the doctor gave me a prescription for Hydrocd liquid without additives hoping that might help. I became so ill with it after a second dose that Del called in a nurse about 4AM. It was a 10++pain level. Only way to describe it!!
Saturday Cindy was over with Don on his motorcycle. She put together a couple batches of Plan D flourless muffins I love. She also ground my cranberries & orange for salad. Makes me happy to use some of my food before it spoils. She did a labor of love I know because I am aware that cooking is NOT her favorite thing! It is so appreciated.
Sunday: I am back with ICE as I am allergic to so many medications. My neck pain is better today. Praise God! I even got on the computer again and blogged a bit.
The nurse will be here tomorrow. Feeling better so she didn't have to return again yesterday.
Hope I can either add to or complete a computer job for a lady. I started it last week because she purchased a new computer so I installed much of it and a router as well. I brought home her other computer so I could transfer files for her. I am ready to put them on her new computer now. She has 3 or more other programs which need to be installed so hopefully I can get that done for her.
I have a class at 3PM so need to have another 2 hours of energy. So thankful for my helpers.
Neck Pain on my Right side and surrounding my ear has been active all day. This has been going on for about 3 day and only getting worse. We had the nurse over last night in hopes to get help with sleeping at least. I couldn't take the last medication subscribed for pain so we are back to the beginning hoping something will bring relief. You can lift that up in prayer. Thanks!
ReplyDeleteWe have medication for sleep which has helped me not to stay awake even when I awaken from pain. It has been such a relief to have a good nights sleep! Del even slept better and longer which has helped us both. Thanks for the prayers! If I can just sleep and deaden some of the pain that will be a big step forward.!!!!
ReplyDeleteThank you for sharing your story. RIP Judy Ann Carstens passed away on March 7, 2012, in Mesa, Arizona
ReplyDeleteI'm 55-year-old from Paris, I was diagnosed with second-stage liver cancer following a scheduled examination to monitor liver cirrhosis. I had lost a lot of weight. A CT scan revealed three tumors; one in the center of my liver in damaged tissue and two in healthy portions of my liver. No chemotherapy or radiotherapy treatment was prescribed due to my age, the number of liver tumors. One month following my diagnosis I began taking 12 (350 point) Salvestrol supplements per day, commensurate with my body weight. This comprised six Salvestrol Shield (350 point) capsules and six Salvestrol Gold (350 point) capsules, spread through the day by taking two of each capsule after each main meal. This level of Salvestrol supplementation (4,000 points per day) was maintained for four months. In addition, I began a program of breathing exercises, chi exercises, meditation, stretching and stress avoidance. Due to the variety of conditions that I suffered from, I received ongoing medical examinations. Eleven months after commencing Salvestrol supplementation But all invalid so I keep searching for a herbal cure online that how I came across a testimony appreciating Dr Itua on how he cured her HIV/Herpes, I contacted him through email he listed above, Dr Itua sent me his herbal medicine for cancer to drink for two weeks to cure I paid him for the delivering then I received my herbal medicine and drank it for two weeks and I was cured until now I'm all clear of cancer, I will advise you to contact Dr Itua Herbal Center On Email...drituaherbalcenter@gmail.com. WhatsApps Number...+2348149277967. If you are suffering from Diseases listed below,
ReplyDeleteCancer
HIV/Aids
Herpes Virus
Bladder cancer
Brain cancer
Colon-Rectal Cancer
Breast Cancer
Prostate Cancer
Esophageal cancer
Gallbladder cancer
Gestational trophoblastic disease
Head and neck cancer
Hodgkin lymphoma
Intestinal cancer
Kidney cancer
Leukemia
Liver cancer
Lung cancer
Melanoma
Mesothelioma
Multiple myeloma
Neuroendocrine tumors
Non-Hodgkin lymphoma
Oral cancer
Ovarian cancer
Sinus cancer
Skin cancer
Soft tissue sarcoma
Spinal cancer
Stomach cancer
Testicular cancer
Throat cancer
Thyroid Cancer
Uterine cancer
Vaginal cancer
Vulvar cancer
Hepatitis
Chronic Illness
Lupus
Diabetes
Fibromyalgia.