Stories 2010

2010 starts here

Jay’s Story – as told by Barb

My husband had been diagnosed with AIHA back in January of 2006.  He has had six treatments of Rituxan.  Prior to the last treatment his hemoglobin dropped to 8, so they gave him a blood transfusion in October. After that, his fingers started to pain him terribly. The doctor said it was because of the Cold Agglutinin.

Ended up in emergency where they gave him his sixth treatment of Rituxan and the doctor said Cytoxan would also help. Was in the hospital for six days in terrible pain with his fingers He received the Rituxan, but, unfortunately, his fingers on the right hand, the middle and ring finger and pinky turned a dark color with the ring finger tip turning black.  It was diagnosed as gangrene.

He had three more treatments of Rituxan, ended up with the morphine patch for pain.  Also had three more treatments of Cytoxan.  In the meantime, he had to have his toe nails cut, so went to his foot doctor.  This doctor had seen gangrene in toes, so he told us what he did was to prescribe nitro cream to be used on the wrist and joints of those fingers that were affected by the Cold Agglutin, which was what our doctor eventually said was causing the gangrene.  He also had five more transfusions while in the hospital, but, fortunately these were warmed, which the first one wasn’t, and I think is what caused the gangrene.

At this point, his one finger (the tip is dead) I started soaking it in Epson Salts.  Our doctor has never seen this, so we are on our own with the treatment.  He just wants to keep giving my husband Cytoxan, which I don’t feel is helping much.  I guess I’m just venting, don’t know what else to do at this point.

His hemoglobin was 10.6 two weeks ago, before he got the last dose of Cytoxan.  We go back on Monday to see our Oncologist. We actually went 11 months before we had to have Rituxan again, but the doctor panicked when his blood dropped to 8 which is when he ordered the “cold'” transfusion and when our bad troubles started.  Don’t know what your situation is at this point, but I do know that cold transfusions are a NO NO.

Have no idea what the doctor wants to do next.  I feel he should leave well enough alone for awhile.  Thanks for your beautiful support group.

Update 18 January 2010:

Went to the doctor today and he feels that Jay should have at least two more doses of Cytoxan.  I don’t agree.  His numbers are good, the cold agglutinin dropped to 2038 and the last Hgb was 11.7.  Dr. feels that we are on the right track and we should do this since Jay tolerates it pretty well, thank God.

Barb
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Dennis’s story

I am a 72 year old male – first generation Greek descent.

Father had a kidney tumor and passed at the age of 79, Mother had nothing but arthritis and she died at the age of 94. My sister is a cancer survivor, still going strong at 83 but my brother succumbed to heart disease at 78. I hoping I’m blessed with my Mother’s heart!

In December, 2004, I went to the hospital with pain on my left side just below the chest (later to be identified as being caused by shingles). Full torso scan, EKG and blood tests were taken – scan and EKG was normal – blood tests were not. Shingles were eventually cured but the blood tests eventually led me to a hematologist/oncologist (Dr. Paul Chung). Long story short: a year later after repeated blood testing and a bone marrow biopsy, I was diagnosed with CLL (Chronic Lymphocytic Lymphoma/Leukemia). I was told that this was a cancer that could last for many years until something more serious took over!

So, I did what any other computer nerd would do, I began tracking my blood tests on a spreadsheet which my oncologist found very helpful. Over the next couple of years my blood levels remained relatively stable – which meant there was no treatment protocol as yet – but we kept an eye on them on a three month interval. Since January 2006, my hemoglobin was slowly headed below 10.0 and I was found to have (CAD) Cold Agglutinin Disease (my body creates antibodies containing an enzyme [CD20] that destroy Red Blood Cells). I was sent for a million blood tests at Cooper University Hospital and consulted with Dr. Kanu Sharan.

Funny but serious side of this whole thing with the CAD is that I have to keep myself warm. It was suggested that I move to a warmer climate – well this year, there was no warm climate in the US, except of course Hawaii – so I stayed in New Jersey with the promise that I would do the best I could to keep myself warm. (CAD is exacerbated when outside temperature on your skin gets to below 70 F.)

When my blood levels got to 9.4, In November of 2009, I was given a transfusion and 4 chemo infusions of RITUXIN (each one week apart). The rituxin worked well, the chemo center at Southern Ocean County Hospital was a great place to get treatment and since than I have been relatively clean of CAD. I still have CLL, my Hemoglobin is hovering about 9.5. Because of the cold weather here in New Jersey I’m told that the CAD could return in three to six months. Currently I am on biweekly blood tests for another six weeks. Well – that’s my story – so now we’ll see.

Thanks for listening!

Dennis Fotopoulos

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Judy’s story

My name is Judy Filipich.  I am 72 years old and live in Murrysville,

PA. My story began eleven years ago when I told my doctor that I thought that I was anemic.  He then wrote a prescription for a Hemoglobin and hematocrit level.  The results came back showing that my hemoglobin level was down to eight.  I then had my reticulocyte index tested which came out to a 6.6% meaning that my red blood cells last about twenty days, and normally they should last for one hundred twenty days.  I didn’t have to go through a lot of tests to find out why I was anemic, since my primary care doctor figured it our right away.  He referred me to an oncology hematologist who informed me that I might need a blood transfusion. He performed a bone marrow biopsy and luckily, it turned out to be normal. I was put on Procrit, and my hemoglobin level rose, so I didn’t need a transfusion.  I see my hematologist every five or six weeks for blood work and a check up.  I think that I developed this condition because of the stress experienced after my husband died.  I was only fifty-five years old at the time.

I worked part time at Kaufmann’s department store.  Because of the air conditioning, my fingers would turn white, seem to become frozen, and I would lose feeling in them.  I would have to leave my work place and soak my hands in warm water.  The air conditioning continued to bother me to the point where I was getting blood in my urine.  At first it was thought that I had kidney stones, but that was ruled out.  My doctor referred me to an urologist who performed a cystoscopy.  He found everything to be normal, but performed a cystoscopy again just to be sure.  I could no longer work in an air conditioned environment, so I had to retire.

I was very concerned to see all this blood in my urine.  While I worked, the insurance I had then mailed the Procrit to me and I was able to give myself the shots that I needed once a week, but when I retired and am now on Medicare, I have to go the doctor’s office every one or two weeks, have a CBC done first, and if my hemoglobin count is under twelve, then I receive a shot. My blood has to be drawn from my arm since it is impossible to have it drawn from my finger.  I have an appointment with my hematologist about every five weeks, and he does a lot of blood work.

For about a year and a half, I have been on Aranest, which is longer acting.  I can go up to three weeks without a shot in the summer.  Well, now, after having been on these medications for four years with Medicare, they now decided not to cover Aranest or Procrit, and there is no way I could pay for this myself.  Aranest is about $2000 a shot.  They pay if you have cancer up to a hemoglobin level of 10, but not at all for cold agglutinin disease.  How can they pick and choose like this!  I even went the Senator’s office for help, but they refused to believe that I had primary cold agglutinin disease even though I gave them permission to review my medical records. It didn’t do any good.  They told me that since I am seeing an oncologist, that I must have cancer and that my doctor wasn’t using the right codes I felt like I was put out to pasture.

I then called the producer of this medication and was told that there is a foundation that helps those whose insurance does not cover it. I and my doctor’s office had to apply and be approved in order to receive this medication.  It took a month for the approval to come through, and in the interim, I had to buy the medication on my own.

When preparing meals, I can’t cut chicken or vegetables from the refrigerator, without stopping to warm my hands in warm water.  When shopping in the supermarket, I wear gloves and hand warmers, and still my hands become white and numb.  When driving, I place my gloves on the heater vent to warm them up.  I took a gardening course, and we had a class outside to learn how prune trees and shrubs.  It was cold, and although the temperature was in the thirty’s my nose turned to a dark purple color.  This even happens in a supermarket.

I love to garden and swim and am in very good health, except for this condition.

Judy Filipich

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Chris’s story

I am writing this worried about my husband Chris who was diagnosed with Cold Agglutinin Auto Immune Hemolytic  Anemia about 6 years ago after feeling unwell decorating in November. His hands felt rubbery and he was passing blood and felt extremely tired.

On visiting our GP he was admitted immediately  to our local hospital in the Isle of Man ( Famous for the annual TT races and Manx tail less cats,  situated in the Irish sea). After a week of  tests, with us unsure of what was happening and fearing the worst, they sent him by plane to the UK to Liverpool Royal Hospital, our specialist for blood disorders in the north west of England. Here he was given extensive tests under different conditions  and was found to be a healthy specimen for his age, he is now 64, but they found unexplained CAHAD with his hemoglobin levels extremely low but at least now we had a name for what was wrong.

He was sent home and given a course of steroids and we made the plane journey back and forth each week with the steroids stepped up to a massive 12 a day plus folic acid, but no blood transfusions as yet. Yes his levels went up slightly for a while but he was like a manic hyperactive bunny who couldn’t make rational decisions and was hell to live with.

I trawled  the internet for information as we felt so isolated because it is so rare. My husband we think is one of only two in the north west UK with it. We have been told this so many times like we are lottery winners….. if this is a lottery win we can do without it. Even the specialists are stumped on how to treat it here in the UK its so rare. So when I came across an article that stated that steroids did little to help in the long term I printed it out for my husband to read. He decided to take it with him on his next visit to the Royal. He was a bit nervous in showing to his doctor but she was more than glad to read it. So gradually the steroids where withdrawn over a number of months Thank God!

Now he was started on a course of immune suppressants which helped lifting his levels to an expectable level and gradually our visits went from weekly to bi weekly then monthly to every two months to three. This was also helped by mild winters and warm summer weather. So gradually Chris eased himself off the immune suppressants to just what he felt was acceptable, as he, up until this illness, had never taken any medication in his life or indeed hardly visited our GP. The word paracetomal is alien to him. He was a fit man who worked outside in the building trade enjoyed the outdoor life and had travelled the world in his youth in the Merchant Navy, being ill wasn’t the norm for Chris and knocked him for six as it meant a life change and early retirement. But he has always been a positive man who wont let things beat him and was determined to keep as active and as busy as he was able with his now limitations.

Pushing himself and giving himself goals to achieve like last summer climbing Ben Nevis with our eldest son and astounding the doctors at the Royal that he had the energy to do it. This is Chris always positive. So we feel hurt by comments from friends and neighbors who think taking iron pills is the answer and when they see Chris on “good days” they think he is fully recovered, we wish. They look at us gob smacked when we say “No its for life”  “Really” is the answer. For most people its a mouth full of a disease and how can you be walking around if its that bad.

We had a winter sun holiday in January 09 to Egypt which proved sunshine is the tonic he needs as he felt energized, so I think after this years awfully long cold winter that will be what the doctor ordered for future winters to break it up a little and make him feel a little more like his old self again especially as we are now back to three weekly visits with his blood levels lower.

He was shocked when they told him that it was 5.1 on his last visit, his consultant said ” You shouldn’t be standing!” So he was rushed for more painful tests, six phials where taken and they found his blood was “sticky” but his level had come up to 8.1, on his last visit three weeks earlier it was 7.1. Chris’ body seems to have adjusted over the years to low levels so he is quite happy at 8.1 though of course feels the benefit when its higher. The highest its been is 12.3.

We don’t know how long he has had this disease, maybe years, as he remembers always feeling tired but just putting it down to hard work and adapting to it, which we think has put him in good stead now as it would knock someone else sideways.

He is in bed now trying to get warm as its a very wet day outside, damp air seems to bring on his condition as does foggy weather along with extreme cold, with first his hands becoming purple speckled even with thermal gloves and now his feet are starting and he has the purple ears, nose etc on exposed areas. Has anyone the same problems as he has wearing glasses they get steamed up when he wears all the head gear.

We would love to hear from anyone in the UK with this disorder particularly in our area.

Update May 2010
Thought I would give you an up date on Chris’s visit to the Royal hospital Liverpool last Wednesday 14th April. We have to be up at the un Godly hour of 5 am to get to our local airport for our 7.10 am flight to Liverpool. Chris had his bloods taken and then the long wait for results and a 5 minute chat with a consultant – all that way but that’s the NHS for you. Thankfully Chris’s blood was up a little to 8.’7, not brilliant but at least rising with the warmer weather we’ve been having ; so thankfully we have a respite of 10 weeks till our next visit as its an extremely tiring day for both of us and always takes us days to recover.

Not sure if they are satisfied with Chris’s results or just a cost cutting measure as our health service is a massive hungry beast but anyway we have a hotline if we are at all worried. Chris seems to have adapted to his low levels and possibly may have had this condition far longer than diagnosed maybe from childhood so seems to be able to cope on half throttle. He is busy working on the outside of our house at the moment as the weather permits and actually puts healthy men to shame as he never stops till his condition prevents him. He has  always been very positive and up beat and is more concerned about me half the time than himself. So to all the CAD sufferers out there be positive and try to live as normal a life that you can and make the most of the good days like Chris does.

Update January 2012
I have just been having another good look at the CADDY website to refresh myself and Chris, its amazing how you find bits of information relevant that you may miss on previous visits, so advise other sufferers  to do the  same on a regular basis. Being well informed  is crucial to this rare condition as you find often that you have to inform the medical profession as often they have never ever come across it before in their careers.

As over 300 patients travel from the Isle of Man per week to various hospitals in the Liverpool area Nobles being a small hospital can not cope with very rare heath issues such as certain cancers, blood diseases, transplants, serious gyna and obstetrics etc though is brilliant at burns, fractures & motor bike injuries  because of our motor biking history.

This was our second visit this month having been already on the 4th.  We were up early on a gloomy drizzly morning to get the 7.10 am first flight to John Lennon airport where we are met by  mini buses to take us for our appointments many patients are wheel chair bound, which makes you even though suffering; feel quite humble.

He  suffered a set back in late November even though he felt ok. He was greeted by 2 consultants and a specialist nurse when called in for his appointment, all looking extremely concerned as his levels had dropped to an all time low of 6.6, lower than when he was first diagnosed. Their  immediate reaction was to talk of blood transfusions and wanted to admit him which Chris refused preferring to have his medication stepped up and be at home instead.

He had been managing on just 3 immunosuppressant’s a week which in hindsight was silly but he has always been determined to take the minimum he could get away with  and as “he managed” he got away with it . Mainly because he was seeing and convincing  his specialist nurse rather than a consultant.

His rude awakening came after being silly doing some gardening the day before his check up when he got well and truly caught out.

So he was prescribed 8 steroids and and 3 immunosuppressant’s a day (instead of the 3 a week he had been taking) and had to come back in 4 days to see if they had managed to increase his levels which they had to 8.6,  and was allowed to decrease the steroids to 7 a day after mentioning the they did very little after a quick effect when initially prescribed when first diagnosed. We had another appointment booked for the next week with his levels being 8.9 and another just before Christmas on the 23rd when his levels had slightly dropped  back to 8.7.

On our visit before the last it was 8.6 . On our visit on Wednesday it was 8.9 and he now takes 2 a day of the steroids and 3 of the immunosuppressant daily and we go again for another visit on the 1st February. We think the next step if there is no real improvement he will have to have blood transfusions as the next course of treatment.

With this disease you can not afford to drop your guard or be complacent and even though you may not show symptoms or like Chris having just learned to adapt to levels which would hospitalize others, it also pays to keep record of your treatments so you can refer back and in our case remind medical practitioners of past treatments.

I am in the process of trying to abbreviate Chris’s condition to enable him to have information readily on hand in case of medical emergencies or holidays etc, possibly using pictorial info easily understood to help in case of foreign travel, which can be placed in a wallet or some kind of  wrist band – medi alerts have there place in most diseases, but with CADDY being so rare earlier intervention ie warmed rooms, blood etc is required quickly and the effort of trying to explain can be frustrating and life threatening  when there could be delays because of language and ignorance Even when visiting your Optician or Dentist it is advisable to inform them ,as often other health issues can arise. On a visit to our dentist we found the cold spray treatments they use can cause problems, so please CAD sufferers do a print out for them to study before you go for treatment.

Claire & Chris Morgan
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Annegret’s story

My first encounter was in 1991.

At this time my Primary Care Physician could not get a CBC, because my blood clotted. So he sent me to a Hematologist. He drew blood and really did not tell my anything. My PCP told me during my next visit that this was a Condition of my Blood (not being able to get a CBC) and it was nothing to worry about.

Fast forward to 2002. We moved and subsequently I changed Doctors. The new Doctor did not believe it was nothing to worry about and referred me to a different Hematologist. After several visits and tests the Dr. first suspected I had Multiple Myeloma. A Subsequent Bone Marrow Biopsy ruled this out and I was told that I had Cold Agglutinin Syndrome. At that time my Hemoglobin Levels were still in the 11 – 12 Range. He advised me to take Folic Acid and to stay warm. I visited with him every 3 months.

We moved again, but I still continued to drive 80 miles one way to see him every 3 months, but all he was doing was “watching” my Hemoglobin. I asked him for a referral to a Hematologist closer to my Home and he referred me to my current Doctor.

He started seeing me once every 2 months. My Hemoglobin started to decline and he put me on Leukeran for a while. At one point I was taking Prednisone. I had one series of 8 Rituxan infusions, which ended in August 2009. The last infusion I received at a Clinic in Everett, WA just prior to going on a Cruise to Alaska. When we returned I went immediately to the Clinic in Everett, since I was feeling extremely weak. They made arrangements for a Blood Transfusion, since my Hemoglobin was 3.9.

I received one further Blood Transfusion in June 2010.

Having had several transfusions, my ferritin levels were close to 1000 and my doctor put me on Exjade. I took Exjade for 3 months and this lowered my ferritin levels to about 500. So right now, I don’t have to take it. As a matter of fact, right now, with the exception of Folic Acid, I am not taking any medication that is specifically for the CAD.

Since my Hemoglobin has stabilized around 10 – 10.5 my Hematologist felt that is is sufficient to see him once a year.

I see my PCP every 3-4 months and he checks my Hemoglobin, I also still see my original Hematologist in Dallas once a year, so I feel that everything is covered.

I keep warm, do not eat cold food and do not drink any cold drinks.

Annegret Winsor

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Marta’s story

Me llamo Marta, tengo 55 años, vivo en Las Islas Canarias (España).

En el verano del año 2000, al salir del baño en la playa, mis piernas se pusieron rojas y picaba mucho. Al año siguiente, cuando me  bañaba en el mar, la urticaria se extendió por todo el cuerpo.

En el año 2002 comenzó a hacerme daño el frío, mis pies se dormían y dolían mucho, mis orejas, nariz y manos se volvían de color violáceo.

Lo comentaba a los médicos y no me daban una respuesta, así que continué con mi vida normal pero sin ir a la playa y cuidándome del frío.

Durante estos años, en algunas ocasiones, mi orina era de color marrón.

En noviembre de 2008 me hice un análisis de rutina y se me aglutinaron los glóbulos rojos, luego calentaron los tubos para colocar la sangre y repitieron el examen.

Tenía la hemoglobina a 9, glóbulos rojos 2,900,000 y los glóbulos blancos: 2.500.

Criaglutininas reactivas a 4ºC: ( 1 /512) y a temperatura ambiente: ( 1 / 64), no reactivas a temperaturas superiores a 30º C.

Mi hematólogo me hizo un scanner y descartó cualquier otra enfermedad y diagnosticó CAD. Tomo 5 miligramos de ácido fólico todos los días.

Consulté a tres hematólogos más y no saben lo que tengo.

En el verano del pasado año ( 2009) mi hemoglobina subió a 12.5 pero en enero de 2010 bajó a 10.5.

La hemólisis continúa.

Mi tratamiento actual es ácido fólico y cuidarme del frío.

Me pregunto qué puedo hacer para tener unos valores normales. El clima de Canarias es cálido. En invierno tenemos una media de 18ºC.

Soy profesora y no sé si el contacto con los virus que los niños llevan a clase me perjudica. ¿Cree Ud que no debo trabajar?

¿Se convertirá esta enfermedad en otra más grave como me dicen algunos médicos?

Mi hematólogo dice que tengo Cad y que así seguirá siempre, ¿Que opina Ud?

He buscado en España algún caso de Cad y no he encontrado. Me puse en contacto con el Centro de enfermedades raras en España (FEDER) y no conocían a nadie. Por eso me llevé una gran alegría al encontrar esta página web en EEUU.

Ahora sé que hay personas con esta patología. Me he sentido muy mal pues los médicos no me entendían. Aún hoy algunos médicos no me creen.

Muchas gracias a Bea y Betty por contestarme tan rápidamente y ser tan amables conmigo.

He resumido mi historia desde el año 2000. ¿Qué opina de todo esto?

GRACIAS

TRADUCCIÓN – TRANSLATION

My name is Marta, I have 55 years, living in the Canary Islands (Spain).

In the summer of 2000, out of the bath on the beach, my legs were red and itched a lot. The following year, when I was bathing in the sea, the hives are spread throughout the body.

In 2002 he began to hurt me cold, my feet fell asleep and were very sore, my ears, nose and hands turned purplish.

He said doctors and did not give me an answer, so I continued with my normal life without going to the beach and watching over me from the cold.

During these years, sometimes my urine was brown.

In November 2008 I did a routine analysis and I agglutinated red blood cells, then heated the blood tubing set and repeated the test.

I have hemoglobin was 9, and 2,900,000 red blood cells and white blood cells: 2500.

Criaglutininas reactive at 4 °C: (1 / 512) and room temperatura: (1 / 64), non-reactive at temperatures above 30 º C.

My hematologist gave me a scanner and ruled out any other disease and diagnosed CAD. Volume 5 milligrams of folic acid every day.

I consulted three hematologists more and do not know what I have.

In the summer of last year(2009) my hemoglobin rose to 12.5.But in January 2010 fell to 10.5

The hemolysis continues.

My current treatment is folic acid and take care of the cold.

I wonder what I can do to have normal values. The climate of the Canary Islands is warm. In winter we average 18 º C.

I am a teacher and do not know if contact with the virus that children bring to class hurts me. Do you believe that I should not work?

Does this become a more serious disease like some doctors tell me?

My hematologist says I have CAD and that this will continue forever, what is your opinion?

I searched in Spain one case of CAD and have not found. I got in touch with the Centre for rare diseases in Spain (FEDER) and did not know anyone. So I took a great joy to find this website in the U.S..

Now I know that some people with this condition. I felt very bad because the doctors did not understand me. Even today some doctors do not believe me.

Thank you very much to Bea and Betty for answering so quickly and being so kind to me.

He summed up my story since 2000. What do you think of this?

THANK YOU

Marta Loppery

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Dorothy’s story

How fortunate I was to find this webpage together with CADdy’s sharing their helpful stories.

dorothy1dorothy

I was dx’ed with Idiopathic Autoimmune Hemolytic Anemia soon after I had four surgeries, four other invasive procedures, anesthesia (of course), all kinds of pain medications (ineffective) in ’08 & ’09. Now, currently, CAD was added with the possibility of Lymphoma. Path report states that possible B cell Lymphomas present – but words like “unclear”, “may”, & “not definitive” are puzzling. A PET Scan has been suggested. So that is my state at the moment.

I’m still in shock that I reached the age of 80 a couple of months ago. My wonderful husband will be 90 in June and very healthy. We are active, have a good diet (with a few “naughtys”), both are pilots, but no plane any longer. (sigh)

Thank you for this list and all those who shared their stories.

Smile – your brain will think you’re happy! 🙂

Update August 2012

First I want to mention that I’ve had several experiences with the medical profession – the doctors, technicians, labs & staff. So many don’t know about CAD and the need for staying warm – the necessity of warming all solutions, care for drawn blood, and putting ice packs on the body or providing warm blankets. It’s wise to be vigilant, assertive and by all means follow up on every step.

ie:

Blood was drawn. I mentioned I had CAs. Tech asked “what’s that?”

Another time – shall I say a “discussion” broke out between a supervisor (who was taking the blood) and a tech when I mention having CAs. The supervisor quietly told me that she would take care of it.

Another time I was to have an IV for retina pictures. The Ophthalmologist told a staff member that I was to have a warm IV solution for the next day’s test. I told the tech the next day to warm the IV solution because I had CAs. He told me that “they” don’t do that! I pushed that who ever gives me the IV that the solution was to be warm. When the IV doc arrived he was carrying the solution in his shirt pocket. It was warm!

After a recent hernia surgery, the nurse put an ice pack on the incision. Groggy, I screamed to get that off of me. That’s just a few incidences. It pays to be vigilant & followed through all the way. Good people can “drop the ball”!!!

I decided not to do the PET scan. I wasn’t convinced it was really necessary. I want to avoid as much radiation as possible & any IV’s or shots that scans seem to use. I saw the Hemo/Onc last week. When he arrived instead of the usual “How are you doing?” it was “You’re looking good”. Wow! (… then why am I here – I said to myself…). We went over the numbers. He still states “borderline Lymphoma” meaning Indolent Non-Hodgins Lymphoma, but I just haven’t enough of those cells (but slowly growing) for a definitive dx’. My numbers flux from 6 months to 6 months visits – only a yearly visit to the Endo for a thyroid cyst which hasn’t showed any cancer cells ….. yet. So I’m on this “wait & watch” with both docs. The Hemo/Onc’s advice as I leave is always “don’t get cold”!!!

I look ridiculous carrying sweaters & jackets in 90 degrees; however I may be confronted with A/C. It’s almost worse in the summer than it is in the winter.

Here are my numbers: WBC/6.1; RBC/3.35L; Hgb/11.2L; Hemat/33.1L; MCV/99; RWD/13.9; Titer/1:2048 The Hemo/Onc has not suggested chem or treatment of any sort. Could it be, he knows I would resist? I’ve had breast cancer 21 years ago & managed with surgery only. My energy is limited, but I get a lot out of what I have.

Since I last wrote last my husband’s mild “leaky” heart valve, has turned to major. At his age of 92 it’s not likely he would survive replacement; but still has a good “pump” & no heart disease per se. He has his limitations tho’ – like I do. We still bike, but no hills; walks, but no hikes;  gym classes, but no aerobics; tennis rackets, put away. He uses the gym elevator, I easily manage the 22 steps to Flexible/Movement & Pilates classes (at 82). When through, we both walk DOWN the stairs together. (sigh)

Dorothy Ingerson

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Jane’s story

My mom first realized there was something wrong when she accidentally cut her finger with a blade and instead of bloody red, the blood that oozed out was a bit orange-y. Alarmed, we immediately went to Medical City Hospital the following day for a CBC test and blood typing. We waited for the results for hours, but they kept telling us they couldn’t release the results because it was being “rejected”.  Finally the head pathologist suggested we go to Metropolitan Hospital because they were better equipped to handle cases like this and so we went and they too had difficulty. They had to run special tests to determine my mom’s blood type. The head medtech informed us that her blood was coagulating in room/cold temperature and that she had Cold Agglutinin Disease.

Cold Agglutinin Disease is a condition where the antibodies attack red blood cells in cold temperatures. The tech also said that if ever my mom would need a transfusion they would have to use a blood warmer. After going to several different hematologists, we finally settled on Dr. Torres in Cardinal Santos Hospital. He put my mom on 40,000 units a week of Procrit, an injectable medicine that stimulates the bone marrow to produce red blood cells. After 2 shots my mom’s hemoglobin rose to 8.9 from 8.6 – a mere .3 but at least there was an improvement. As of now my mom is still taking Procrit. This Thursday (sometime in May 2009) she will receive her 5th shot and if her hemoglobin reaches 10, she’ll have clearance to travel abroad to Hawaii for a “2nd” opinion from a hematologist.

UPDATE June 18 2010

Besides Procrit my mom has also tried taking prednisone and Imuran, as prescribed by Dr. Narciso of St. Luke’s Hospital, but with disappointing results. Her hemoglobin which usually hovered at 8.2 to 9 while taking Procrit dropped to 7.6 after a week of taking prednisone/Imuran so she had to have a blood transfusion. After 2 units of blood, her hemoglobin rose to 10.2 but this immediately dropped back down to the 7’s after a week or so which necessitated another 3 bags of blood. Again, her blood rose to 10.6 but dropped to 6.8 after another week. In addition to this, she complained of weakness, fatigue, heaviness in the chest, and generally just wasn’t feeling as strong as she used to be. Finally, we decided to stop the Imuran and wean her off the prednisone and go back to Dr.Torres to start taking Procrit.  This turned out to be a wise decision as the steroids and Imuran just weren’t doing her any good. Perhaps as a result of the Imuran weakening her immune system, my mother also caught pneumonia and had to be hospitalized and treated with IV antibiotics for 4 days and at the same time be given 3 bags of blood which resulted in her hemoglobin rising to 10.3 and now to 11.6 from taking Procrit.

As for life changes…no more extensive malling, staying inside cold air conditioned rooms for too long. Even in hot weather she has to wear socks to bed, and she can’t go on a walk without her stopping to catch her breath. The frequent visits to the hospital for injections and blood tests also leaves her feeling drained and depressed at times because she doesn’t want to be pricked and prodded with needles anymore. and she has been to so many doctors already.

Drugs she has tried include a combo of prednisone and Imuran which didn’t work and only led to a huge drop in her hemoglobin and to being transfused several times, almost costing her her life. The Procrit has been effective but the effect usually doesn’t last very long.

She has to take 40,000 units of Procrit every week if she’s to expect her hemoglobin to stay at the 8.2 – 10 range.  And now Dr. Torres is considering putting her on Rituxan, which my mom isn’t too keen on on account of it being a powerful chemo drug and in fear of the side effects that could come with it.

My mom also underwent several tests: a CT scan which tested negative for lymphoma but positive for pneumonia; a bone marrow biopsy, the result of which was possible low-grade myelodysplastic syndrome that has been ruled out by 2 of her doctors, fortunately; and several others like the coomb’s test, reticulocyte test, bilirubin tests, and ferritin tests.  Her white count turned out really high and became even higher possibly due to the blood transfusions).

So that is her story so far. I shall add more as more happens.

Jane’s daughter

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Barb’s story

I was diagnosed with MGUS–Monoclonal Gammopathy of Undetermined Significance– in 8/09 when an M spike was discovered from a blood test ordered thru my neurologist when evaluating my ulnar neuropathy.

In Jan. 2010 after my Bone Marrow Biopsy, at the age of 61, I was diagnosed with Cold Agglutinin Disease. Since my hemoglobin count was trending down to 11.3  I was  started on Prednisone.  In March my count was 9.7 & I started my first Rituxan infusion.  I had these infusions 1 x wk for 8 wks while taking prednisone & folic acid.  My counts still trended down & there was talk of having my spleen removed w/a very small chance of improvement – glad I didn’t go that way.

After my 8th rituxan infusion my count was 7.3; the doc wanted me on chemo.  I requested trying out oral cytoxan, before the heavy duty stuff & I didn’t really want a port.  I then had to have a transfusion (3 units that they had to warm up first, which took approx. 12 hrs to administer!).  I then developed a cough & fever of 102 which I couldn’t shake, so I was hospitalized for 5 days.  No pneumonia/no cause of fever diagnosed, post nasal drip caused my cough.  Came home & continued w/oral cytoxan & my count started trending upward.  Doc not sure if I improved from the Pred & cytoxan; or the Rituxan & cytoxan; or just the cytoxan.  Very trial & error type of condition.  But eventually, it worked for me.

I haven’t seen the doc in 6 wks; will see him this Monday.  Big change from seeing him 3-4 x wk!!  Sept. 2010, my count was 13.7.  I’ve been in the normal range since July.  I was on oral cytoxan for 2 months & that set me straight.  I’m in complete remission; but there’s no promise that I’ve been “cured”.  But I danced at my cousin’s wedding in September ALL NIGHT LONG & really feel great now.  10/30/10

Barb Simon

Miami, FL

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