Wbc, Anc, Platelets , Hemoglobin

[amyangel]

Hi all that have gone through a SCT when you say you feel down and out for about two weeks is it because your counts get so low?? and how low did your counts go ? wbc ,anc , platelets , hemoglobin

or is it a combination of the chemo , sct and your counts

Right now my daughters counts are not so great especially her WBC .6 AND ANC, .1 and she feels pretty crappy how much more crappy will she get ? Oh and we haven't even had a SCT yet .

her whole body just aches poor thing .

[rar]

All experiences are different. I felt bad on the initial chemo, radiation made me feel much worse, by transplant time it was really bad. My WBC and ANC were 0. Platelets went to 11 and hgb to 7. If you don't understand the terminology just ask. They are friendly here and someone will answer.

Also keep in mind the process can be harder on the care giver than on the patient. In 2 weeks she will be feeling much better. At 2 months I have regained about half of my pre transplant strength. When is thr transplant scheduled? Is it an Myeloablative transplant? She is having this as an out patient with no hospital stay? How close of a match is the donor? I spent a week.

Ray

[DanL]

When I went through transplant, I had pretty good energy and was not in any particular discomfort until the white blood count and neutrophil count dropped down to almost zero. Like Ray, I was pretty down for about 1 week as the WBC got closer to zero and started recovering as WBC recovered. I didn't need very many RBC transfusions - I think that I had 5 or 6 total from just before the start of transplant through the end of my hospital stay, but I received platelets about every other day.

Unlike Ray, I had a fully myeloablative transplant that included busulfan and cyclophosphamide followed by ATG and Methotrexate. The chemo only really hit me on day 1 of the ATG, otherwise I feel like I fared pretty well. I had some GI issues (i am pretty sure everybody does), but did not experience severe nausea - I did take lots of anti-nausea drugs to be sure though.

[amyangel]

My daughters SCT is scheduled for October the 1 ,2 ,3, ,4 ,5, 6th day is a rest day and the 7th is SCT day 2014 .

Yes the hospital has a few places to stay close by for outpatient a apartment that our insurance will pay for and a place called the Kathy's house where many of the cancer patients stay they are all about 2 min from the hospital.

My daughter will report to the DAY HOSPITAL every day
She will be assigned a room and no one else will use it but her . she will receive her chemo and fluids, blood, platelets ect. and on day 7 she will receive her SCT . and we will go back to the apartment. The BMT Doctor thought this would be better for her she will get much better sleep , possibly eat better for me I can give her her showers and it will be in a home like setting with could hopefully be a better healing environment with things from home . and less germs to hang out with .

My two other adult children were not a match , but they did find many from the BE the match registry we are over joyed with happiness !!! I know he is a young white male and that is it .

Her WBC is pretty close to zero at .6 and her ANC is .1 which is also so close to zero that some of her symptoms she is having now could maybe some of the same symptoms I might see again ?

My daughter will be having chemo first Fludarabine , Busulfan , followed by methotrexate after the SCT .

I so get not everyone is the same ,but yet we are because we are all fighting a battle, and I think its has made us all look at life differently. and even possibly pulled us closer to our creator.

Myeloablative transplant ? I'm not even sure what this is lol I don't even know what kind of MDS she has lol I just know what she has is rare .and that she has ALPS/MDS FIBROSIS

Rare because of her age 27 and that she has = Autoimmune hemolytic anemia
Anemia is a low level of healthy red blood cells (RBC). RBCs carry oxygen from the lungs to the rest of the body. When red blood cells are low, the body does not get enough oxygen. This can cause symptoms such as fatigue, pale skin, or irregular heartbeat.

Autoimmune hemolytic anemia is caused by the destruction of RBCs. It can be a serious, fatal condition that requires care from a doctor.

She also has Evans syndrome =
Evans syndrome is a very rare autoimmune disorder in which the body makes antibodies that destroy the red blood cells, platelets and white blood cells. Affected individuals usually experience thrombocytopenia (too few platelets) and Coombs' positive hemolytic anemia (premature destruction of red blood cells). People with Evans syndrome may have low levels of all three types of blood cells at one time, or may only have problems with one or two of them. The exact cause of this condition is unknown.

She also has CVID =Common variable immunodeficiency is a group of disorders in which the immune system cannot make antibodies in response to foreign substances that may cause infection. The main features that separate CVID from other immunodeficiencies are low levels of two specific antibodies, immunoglobulin A (IgA) and immunoglobulin G (IgG). Individuals with this condition develop more frequent infections, particularly in the sinuses, lungs, and digestive tract. CVID symptoms most commonly begin in early adulthood, but have been found in children as young as two years. Though some cases of CVID are caused by known genetic factors, the cause of most cases is unknown. CVID can sometimes be treated by "replacing" antibodies into the body; this treatment is called "immunoglobulin therapy".

And then I was told she had ALPS =
Autoimmune lymphoproliferative syndrome (ALPS) is a disorder in which the body cannot properly regulate the number of immune system cells (lymphocytes). This results in the overproduction of lymphocytes, which build up and cause enlargement of the lymph nodes, liver and spleen. Affected individuals can have a variety of autoimmune disorders, most of which damage the blood cells; some of the autoimmune disorders associated with ALPS can also damage the kidneys, liver, eyes, nerves, or connective tissues. Other signs and symptoms may include skin rashes or panniculitis; arthritis; inflammation of blood vessels (vasculitis); mouth sores; premature ovarian failure; and the development of neurological damage. ALPS is caused by mutations in the FAS gene in about 75% of cases. It is usually inherited in an autosomal dominant manner, although some severe cases are inherited in an autosomal recessive manner. Management may include steroids or other medications, blood transfusions, and/or splenectomy depending on the severity of the disorder. ALPS is categorized into several types based mainly on the genetic cause.

And last we were told that her BMB in Feb 2014 showed MDS . I had know clue to what the heck it even was ???? Every Doc .nurse that came into my daughters room in Feb. was sad so all I thought was it's got to be something sad. I didn't cry I couldn't because I didn't know what it was . They never called it CANCER they only called it bone marrow failure and that she needed a SCT and that was her only cure .

I say Rare because they have consulted the best of the best in cancer and hematology/ bone marrow you name it did looked and they could not come up with a treatment plan that may have been used on someone like my daughter ...Because Amy is the first they have seen with so many autoimmune's and MDS / ALPS for them to compare with they searched the world .
sorry I was so long winded
Sue