Caring For A Loved One With Myelodysplastic Syndromes – Part 2: Doctor Appointments

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Published: Mar 12, 2010 8:00 am
Caring For A Loved One With Myelodysplastic Syndromes – Part 2: Doctor Appointments

For many caregivers, visiting the doctor’s office can be one of the most daunting aspects of caring for a loved one with myelodysplastic syndromes (MDS). However, it is also one of the most important jobs you can do as a caregiver. With MDS, two heads are better than one when it comes to asking questions, making sure all possible treatment options are being pursued, and remembering what the doctor said after the appointment.

In some cases, the physical fight with MDS can leave a loved one too exhausted to fully focus on medical details. Making the most of every visit with the doctor can therefore become a caregiver’s responsibility.

Be Prepared

Anticipation and preparation can often be the key to a successful medical visit, which means knowing exactly where to go, who to see, why the visit is taking place, and what needs to get done at the appointment.

It may be helpful to keep a notebook at home in which you can write information and questions that you want to remember for the next medical appointment.

Keep track of all medications and dosages, as well as a schedule of treatments, transfusions, or other supportive care. It may be helpful to write everything down, or to bring medication containers to appointments.

Record all symptoms and side effects, specifically those that are new or changing, or that the doctor mentioned previously. Although it is a doctor’s responsibility to always ask about symptoms, if you or your loved one do not mention a symptom, then the doctor cannot know about it or do anything about it.

Stay vigilant about pain management. It is important to remember that in this day and age, your loved one does not need to suffer through pain because there are many ways to manage it. By asking the doctor for ways to manage the pain, your loved one can focus on healing or enjoy a better quality of life. A doctor should always ask about pain levels, but it is both you and your love one’s job during an office visit to keep the doctor aware of any and all aches and pains.

Keep a running list of questions for the physician. This way, you will not forget your questions when you are at the appointment. It can be very frustrating to leave the doctor’s office and realize that you forgot to ask a question.

In addition, collecting and organizing a patient’s medical information to bring to doctor appointments can help you and your loved one feel more in control of your loved one’s medical future. Writing down all questions, concerns, and anything else the doctor should know beforehand also ensures that no one loses track of what they want to accomplish at a doctor visit.

It Is Normal To Be Confused

At any doctor appointment about MDS, there will most likely be a lot of information to absorb. Therefore, it is important to take notes, use a recorder, or otherwise ensure that all information given by the doctor can be remembered, understood, and utilized.

Your primary role as a caregiver at a medical appointment is to make sure that everything surrounding your loved one’s illness is clearly understood or documented so that you can research it when you get home. If you do not understand something, ask the physician to clarify. If a doctor cannot answer questions or concerns to you or your loved one’s satisfaction, ask for other resources to find these answers. You should not give up until both you and your loved one are satisfied with your understanding of the details concerning your loved one’s MDS and treatment.

Know What To Ask

The best way to make sure that you get all the information you and your loved one need to know is to plan what questions to ask beforehand, especially if the appointment is the first following diagnosis. Some key questions to remember include:

  • What subtype of MDS does he or she have?
  • How severe is the MDS?
  • Will he/she need more tests?
  • What is his/her prognosis?
  • What is his/her risk of progressing to leukemia?
  • What are the treatment options?
  • Can any treatments cure his/her myelodysplastic syndrome?
  • Which treatment would be the best for him/her? Why?
  • How will he/she know that the treatment is working? How long will it take to start working, and will it ease his/her symptoms?
  • Is the treatment new or experimental, or is it well-tested?
  • What are the potential side effects of each treatment? How long will they last?
  • Are there any trials you would recommend? Why?
  • How much will treatment cost? Will insurance cover it?
  • He/she has other health conditions. How can he/she best manage them together?
  • Are there any diet or health restrictions that he/she needs to follow?
  • Are there any brochures or other printed material that we can take? What Web sites do you recommend?

Additionally, you can also ask questions specific to your role as a caregiver, such as:

  • Are there any symptoms I should keep track of?
  • How can I help my loved one prepare for treatment?
  • What side effects of treatment should I watch for?
  • How can I help my loved one feel better during and between treatments?
  • Can I be there during treatment?

Be An Advocate For Your Loved One

Above all, it is important for you to be an outspoken advocate as your loved one battles MDS. At no time is this more necessary than when dealing with medical and health care professionals.

Diagnosis was probably the first time you heard the words “myelodysplastic syndromes.” By finding the best MDS specialists or health care teams in your area and investigating MDS treatments, trials, and developments online or through health care professionals, you can help give your loved one the edge over MDS.

Helping your loved one through doctor visits is one of the most important ways you can show your loved one that you are there to make sure he or she does not have to face MDS alone.

For more information about caring for a loved one with MDS, please see Part 1 of the series, which is about making your own health a priority, Part 3, which is about coping with your feelings of loss and grief, or Part 4, which is about understanding your loved one’s perspective.

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8 Comments »

  • Gloria Wright said:

    I was recently told I have myelodyplastic sydromone (MDS), preleukemia what exactly does this mean?

  • Avatar image
    Julie Shilane said:

    Gloria,

    MDS is a blood disorder that affects the blood cells in your bone marrow. You may wish to read our Resources section, in particular, the MDS Information section that begins with “What is MDS?”

    If you have any additional questions, please feel free to leave more comments on the site or to contact me by email.

  • Anne said:

    My 88-year old father has been recently diagnosed with MDS and Refractory Anemia with Ringed Sideroblasts. He had a blood transfusion that only relieved his symptoms for a month or so. His immediate next treatment steps are to have a complete physical exam to r/o diabetes, thyroid deficiency, or other difficulties that might explain his low energy level. He will have monthly blood draws to monitor hemoglobin levels, and he is currently above 9.5 and so does not qualify for clinical trials. He will also see a rheumatologist to further explore contributing causes of the low energy level.

    Are any other treatment steps that should be recommended at this time? Also, is there anything about this disease that is genetic?

    Thanks

  • Avatar image
    Julie Shilane said:

    Dear Anne,

    Dr. Mikkael Sekeres from the Cleveland Clinic said, “Well, with RARS, we often start patients who have become dependent on blood transfusions on one of the erythropoiesis stimulating agents – either erythropoietin or darbepoietin, and try these for a few weeks to see if they lead to any improvement in hemoglobin. I might ask, though, why you are looking for another cause for your father´s fatigue – MDS in and of itself can cause fatigue, particularly when someone´s hemoglobin is low.”

    Dr. Amelia Langston from Emory Winship Cancer Institute said, “This is a disorder that is usually very slowly progressive. His low energy may be from anemia, which is low red cells (these carry oxygen). He needs to be managed by a hematologist, who may be able to help with any issues related to his MDS. MDS can also have vague effects that may not be obvious in their origin. Again, having an MDS expert ( a hematologist) is the key.”

  • Bob Sammy said:

    Hello,

    70 year old patient, with Thalassymia minor, undergoes radiation for prostate cancer starting Nov 2009 and ending Jan 2010. Before radiation the patient averaged 10.5-11 hemoglobin. Patient requires his first ever blood transfusion (2u, hemoglobin 7.8) in early Feb 2010, another transfusion (2u, hemoglobin 7.5 to 8 ) late March 2010 (six weeks interval), another transfusion (3u, hemo 7.4) late April (4 weeks), another tranfusion (2u, hem 7.6) late may (4 weeks), then he has an infection and requires 1u of blood per week with hemoglobin ranging from 8 to 9.5. During most of May and June the patient had difficulties walking, very low energy levels, and lots of sleep but he consistently said that he was not sleeping.

    The infection is resolved. His blood is currently at 10.1, one week after his last transfusion when his hemoglobin was at 10.5.

    WBC (2.5), Red, and Platelets are currently low in the baseline.

    He is on prednisone 10mg (because of general overall weakness, and very poor appetite, possibly polymyalgia). The patient felt that the prednisone did help.
    He is on proscar and alfuzosin for prostate.

    Other symptoms:
    1. occasional cough (according to X-ray no more pneumonia)
    2. burn in urine (test showed no infection)
    3. inconsistent sugar levels (he has diabetes Milletus which he manages using insulin)
    4. dizziness, shortness of breath, fatigue.
    5. frequent going to the bathroom (4-6 times per night).

    Relevant information:
    In late April, Bone Marrow Aspirate/biopsy was interpreted as Myelodysplasia/Myelofibrosis with NO blasts. Still awaiting chormosome test for abnormalities.

    Here are my questions:
    1. Can radiation induce MDS in such a short period of time? he finished radiation in January and required blood transfusion in Feb, and then required roughly 2 to 3 units per month since that time. I’m surprised the short period of time between radiation and MDS? Doesn’t it usually take about 2 years? Is it possible that he just has severe anemia caused by radiation? If so, will it ever go away?
    2. Is it possible for the aspirate/biopsy results to be incorrect due to the Sample, the timing, or the interpretation?
    3. How is his Thalassymia (diagnosed in his youth) a part of this illness?
    4. Since he originally was treated for prostate cancer, how dangerous is it to use Epo or other growth factors? Is it completely off the table?
    5. Given the 2 or 3 units of blood per month requirement at this time, could his MDS be high risk despite the lack of any blasts?
    6. After 4 days of prednisone, there was a slight bump in his blood counts (hemoglobin by .4 and WBC by .3), is there room for steroid therapy? I read one article about one 65 year old who achieved transfusion independence after 4 weeks of 1mg of prednisone/1kilogram of body weight. Is the bump based on the prednisone? Can steroid therapy help?
    7. What would be an appropriate way to proceed? What are the chances that his anemia will go away on its own? What is the role of radiation and cancer recovery in this case?

    Regards,
    Bob

  • MDS Beacon Staff said:

    Dear Bob,

    Dr. Stuart Goldberg from the John Theurer Cancer Center in Hackensack, NJ said:

    Hello. Thank you for your questions about MDS and Radiotherapy. It is always difficult to give detailed answers to patient questions without fully reviewing all of the medical information, but I will try to provide some guidance.

    1. Can radiation induce MDS in such a short period of time? he finished radiation in January and required blood transfusion in Feb, and then required roughly 2 to 3 units per month since that time. I’m surprised the short period of time between radiation and MDS? Doesn’t it usually take about 2 years? Is it possible that he just has severe anemia caused by radiation? If so, will it ever go away?

    Radiotherapy is a known cause of MDS, although significantly less so than chemotherapy. The increased risk for those exposed to radiotherapy compared to healthy individuals is about 2-10 fold (compared to 100-300 fold among those exposed to chemotherapy). As you mentioned, typically radiation damage to the blood stem cells leading to subsequent myelodysplasia is a slow process in the range of 2 or more years (the people exposed to atomic bombs or radiation accidents peak closer to a decade later). Radiation however can cause damage to the blood stem cell immediately leading to marrow failure. This happens quickly. An empty marrow (hypocellular) is common with radiation suppression. A packed/full marrow is more common with MDS in which the cells are present but dysplastic (changed). If the marrow is suppressed by radiotherapy but not made cancerous (changed to MDS) there is a chance of recovery with time.

    2. Is it possible for the aspirate/biopsy results to be incorrect due to the Sample, the timing, or the interpretation?

    Making a diagnosis can be difficult even by experienced pathologists. To be called MDS the marrow must show true dysplastic (ugly changes) in at least 10 percent of the cells in a single lineage. As noted above, most patients with MDS have a packed (hypercellular) marrow with extra cells, although 10-15 percent will have an empty marrow. Also, the portion of the marrow nearest the bone (subcortical) is frequently hypocellular so a deep biopsy is sometimes needed to confirm that a hypocellular specimen is not just a sampling error (however a hypercellular specimen should not warrant a repeat biopsy). Sometimes the cytogenetic findings can be helpful in confirming a diagnosis. If the cytogenetics are normal this could still be MDS. But if the cytogenetics are abnormal, the chances are much greater that it is MDS (especially if abnormalities of chromosomes 5 or 7 are identified). Timing is less of a problem, unless growth factors (such as procrit or neupogen) which stimulate the marrow or chemotherapy which can temporarily suppress or change the appearance were just given. These can confuse even a good pathologist. The information given in the case report is a bit confusing as to the precise diagnosis. Ask the doctor for the formal FAB or WHO name (interpretation) of the marrow biopsy. MDS/myelofibrosis is a grab-bag term. There are much more precise definitions of MDS for those without blasts, such as refractory unilineage, refractory anemia with ring sideroblasts, refractory cytopenias with multi-lineage dysplasia, etc.

    3. How is his Thalassymia (diagnosed in his youth) a part of this illness?

    Thalassemia is a genetic disorder that causes abnormalities of red blood cell production. Some patients will have chronically low blood counts (anemia) and some will have abnormally shaped cells. It is important for the doctor to know what a patient’s “normal” count are. I have a patient with MDS and thalassemia. Her normal hemoglobin prior to developing MDS was only 10 gms. Therefore, when she developed her disease (MDS) I had to adjust my thinking to recognize that 10 was normal for her and that I did not need to transfuse her as quickly for a low count. Thalassemia however does not cause, and to my knowledge, is not associated with a greater risk of developing MDS.

    4. Since he originally was treated for prostate cancer, how dangerous is it to use Epo or other growth factors? Is it completely off the table?

    The use of growth factors has become confusing in hematology and oncology. There have been reports that epo (the red cell growth factor) may accelerate tumor growth in cancers such as breast cancer, lung cancer, lymphoma, cervical and head/neck cancer. I am not aware of any data about epo and prostate cancer. HOWEVER to date there has never been any evidence to suggest a detrimental effect of epo on MDS. In fact, to the contrary there are at least 2 case control studies (from Scandinavia and France) that have suggested improved survival with epo treatment in MDS. The situation gets more clouded regarding payment for epo, which for most elderly patients is determined by Medicare-CMS. This is a federally supported, but state run, program. Each area has different rules, so check with the local Medicare office to see is epo is allowed. Myeloid growth factors (to accelerate white cell recovery) are allowed and safe, but typically not recommended for chronic use in MDS patients (minimal benefit).

    5. Given the 2 or 3 units of blood per month requirement at this time, could his MDS be high risk despite the lack of any blasts?

    The common prognostic staging system (international prognostic scoring system) uses the number of lines of cytopenias, the number of blasts, and the type of cytogenetic abnormalities to place patients into groupings. Blasts therefore are only one part of our prognosis systems and no crystal ball is always accurate. However, it is important to note that the IPSS was only developed for “de novo” MDS (that is new diagnosis without cause) and was not validated for patients with “secondary” MDS (such as therapy-caused MDS). There are other systems in use/development that add transfusion dependency, marrow fibrosis, degree of thrombocytopenia, localization of blasts, etc to refine the prognosis system. From the information provided I cannot determine the IPSS, as we need to know if the patient’s platelets/white cells are affected and the cytogenetics. Most books/pamphlets on MDS can help you determine the score.

    6. After 4 days of prednisone, there was a slight bump in his blood counts (hemoglobin by .4 and WBC by .3), is there room for steroid therapy? I read one article about one 65 year old who achieved transfusion independence after 4 weeks of 1mg of prednisone/1kilogram of body weight. Is the bump based on the prednisone? Can steroid therapy help?

    Blood counts bounce around a bit from day to day. What you really need to see is a steady trend. Steroids (prednisone) are not a typical treatment for MDS. However, immune suppressants (such as prednisone) have a definite but small role in the treatment of MDS, especially if the marrow is hypocellular (empty). Elegant studies from the National Institutes of Health demonstrated that immune suppressants (such as ATG, cyclosporine, Campath/alemtuzumab) may improve blood counts in aplastic anemia (completely empty bone marrow causing blood count failure). They have subsequently demonstrated that these same medications can work in MDS. One of the strongest predictors of immune mediated MDS (and therefore a predictor of response to immune suppressants) is the HLA DR15 phenotype. This is your white blood cell type (like A, B, or O on your red cells). The doctors can do a white cell typing and if the DR15 is present immunosuppressive therapies may be appropriate.

    7. What would be an appropriate way to proceed? What are the chances that his anemia will go away on its own? What is the role of radiation and cancer recovery in this case?

    This is difficult since I do not have all the particulars. First I would start by carefully having the marrow reviewed to make sure the diagnosis is correct, and by reviewing the cytogenetics (which take 10-15 days to get back at most, so if done in April they should be available). If the marrow is hypocellular and the cytogenetics are normal, and most important, clear evidence of dysplasia is not present, I would wait it out. If the marrow is hypercellular with clear dysplasia, or there is clearly abnormal cytogenetics, then the diagnosis is probably correct. Given his transfusion dependency, a low intensity treatment such as Revlimid/lenolidomide (if chromosome 5 is abnormal) or one of the hypomethylating agents (such as Vidaza/5-azacytidine or Dacogen/decitabine) would be appropriate. However, treatment options should be made in context of the total picture only after all of the patient’s information is reviewed, and thus my comments are only general guidelines.

    Best wishes. Hope this is helpful.

  • Jil said:

    My 89 year old mother had her gall bladder removed in Feb. 2011, and during that inpatient stay, her platelets were very vey low, in the 60k to 70k range. Before they removed her gallbladder, they gave her several transfusions of platelets. She’s recovered from the surgery now, but monthly visits with hematologist indicate her platelets are trending down again. In late February, she was at 77,000; in mid-March she was at 66,000; last week she was at 51,000. The hematologist recommended a bone marrow biopsy and thinks she may have MDS. I have several questions –
    1. Hematologist said likely treatment will be chemotherapy. At her age, will that be done inpatient? She lives alone (I live a few blocks away, but she is independent), and I work full-time, would really feel better if this treatment was performed inpatient so that someone observed her 24/7.
    2. If she’s is in the hospital, what is the timeframe I am looking for? Days? weeks? Longer?
    3. What other treatments are there, and which of those are done inpatient vs. outpatient?
    4. At her age, if the chemo is ‘too much’ for her to take, are most physicians willing to stop treatment if it isn’t improving her quality of life?
    5. If bone marrow bx comes back negative for MDS, what else could it be?

    Thanks for your help. My mother has been a strong, independent woman her entire life and she isn’t a good patient, doesn’t like to be bed-ridden. So I am not looking forward to this, but the hematologist seems pretty certain that it’s MDS.

  • MDS Beacon Staff said:

    Dear Jil,

    Dr. Emmanuel Besa from Thomas Jefferson University and Medical College in Philadelphia said:

    1. Hematologist said likely treatment will be chemotherapy.

    Newer and novel agents in MDS are a different category from what is perceived as chemotherapy. Revlimid (lenalidomide) is an immunomodulatory drug and has a different mechanism of action from chemo and the other class of demethylating agents such as Vidaza (azacytidine) and Dacogen (decitabine) which are administered either orally, subcutaneously, or intravenous. These do not require hospitalization.

    At her age, will that be done inpatient? She lives alone (I live a few blocks away, but she is independent), and I work full-time, would really feel better if this treatment was performed inpatient so that someone observed her 24/7.

    Most hospitalizations are from worsening of the disease such as low blood counts, infections, and bleeding. Initially these drugs can worsen these before they get better as part of the response. Our goal is to give your mother good quality of life, and that means keeping her out of the hospital as much as we can.

    2. If she’s is in the hospital, what is the timeframe I am looking for? Days? weeks? Longer?

    Hospitalization is only to treat infections and stop any bleeding. We try to avoid long stays in hospital, where they can be exposed to resistant organisms. Transfusions and infusions usually are given in out patient clinic settings.

    3. What other treatments are there, and which of those are done inpatient vs. outpatient?

    I’ve already mentioned the FDA approved treatments available. If she does not get better, there may be clinical trials available in MDS Centers of Excellence, which you can look up on the Internet.

    4. At her age, if the chemo is ‘too much’ for her to take, are most physicians willing to stop treatment if it isn’t improving her quality of life?

    Correct, In fact at age 80 years, we generally do not recommend chemotherapy, since there is information that shows Vidaza (azacytidine) can give a longer survival and good quality of life compared to standard chemotherapy for acute leukemia. We don’t know if your mother is in leukemia or in an earlier stage until she gets her bone marrow test.

    5. If bone marrow bx comes back negative for MDS, what else could it be?

    Generally, the bone marrow will tell us if not MDS, it could be aplastic anemia, or one of the myeloproliferative disorders. Bone marrow testing in the elderly should not be considered an extreme procedure since properly done BM are not very painful and will yield very important information that will answer most of your questions.