Well, I'm a bit short on time right now but I wanted to update everyone about my bone marrow biopsy from the 21st. Bottom line is the pathology report still is not in. But the docs did genetic testing on the cells they were able to get and discovered that I am missing a chromosome. It is called 7 q deletion syndrome. I know right? Weird.
Bottom line, I am one of the lucky less than 1% of people who take the chemotherapy regimen (taxotere/adriamycin/cytoxin) and develop acute leukemia as a primary new cancer. Goody for me. It supposedly only occurs in women over 60. Yeah for me again. I believe it is called secondary acute myeloid leukemia when it occurs as a result of chemotherapy and/or radiation treatments.
I meet with a hematologist next week because my oncologist said that he did not feel comfortable dealing with this type of problem (although he will continue to treat me) and that I need a blood specialist. This explains why my white blood cell, red blood cell, hemoglobin, and platelet counts have been so low and continue to drop.
This is not good news, of course. We will know more after talking to the hematologist but I know how my body feels and it is not good. I am probably not up for any aggressive treatments at this point -- I just want to be comfortable. I am otherwise (hah!) healthy and that has to mean something.
We are not going to tell the girls until after meeting with the hematologist next week. No sense talking about something we don't really know anything about.
I'm off to the beach for the evening! I hope that everyone has a wonderful weekend and a great Halloween! I'm supposed to be the emerald witch. We'll see what my energy is like.
I appreciate continued prayers for me but please also pray for Geoff and the girls. They have a tougher road ahead than I do, I expect.
Love,
Sofie
Friday, October 28, 2011
Thursday, October 13, 2011
Update from yesterday's test
Well I figured I'd better not make people wait too long for an update following my doctor's appointment in Chapel Hill yesterday. The blood test showed that my platelets went up to 65 from 58 but, considering the low point is supposed to be around 150, that's still very low. White blood cell count was 1.7 and the red blood cell count and hemoglobin both went down again, further explaining my present fatigue and "loopiness". So...
On the 21st I will have a bone marrow biopsy (supposed to be fun, they stick a needle into your pelvis bone) to determine if 1) a new primary cancer, like leukemia or some other blood cancer, has developed; or 2) I do indeed have metastases from the breast cancer or 3) I don't have bone marrow cancer issues at all but some other problem bringing my counts down. Doc believes 2 is most likely. The benefit to knowing more about what's going on in my bone marrow is that it theoretically brings in other treatment possibilities. Dr. Muss is going to talk to the blood oncology docs at UNCCH between now and my next appt with him. Unfortunately, at this point, there are not many, if any, treatment options that are likely to improve my health picture. As I mentioned before, the docs will not give me chemo with blood counts this low because almost any chemo will suppress my bone marrow and bring the counts down even more. The only chemo that does not suppress the marrow is Xeloda which I have already crossed off my list by trying it in February 2010 and having Dr. Muss and I determine that it did not work for me.
Doctor Muss also said that my body has responded to all of my treatments the way women's bodies used to respond to BC in the olden days when they did not have any treatments. In other words, everything has failed! Boy that was uplifting.
So continued prayers please. The doc was shocked that I have not gotten infected with anything while having a WBC count at 1.7. He said I must have "reserves" keeping me from getting sick. This whole picture is scary to me because my father's blood counts started tanking right before he ended up in the ICU with complications from stage IV lymphoma last year. Damn this cancer!!!!
More sad news -- the traveling Hosfords canceled our European cruise for next year :( Money is tight with me not working and, to be frank, if I'm not around in July 2012 I am not sure Geoff and the girls would want to go on that trip (planned entirely by me) without me. I'm supposed to go to a conference in Baltimore at the end of this month put on by Johns Hopkins about new treatments for MBC but we will see. Probably not the best thing to get on a plane with these counts. I feel like the boy in the bubble movie from the 70s.....
I am living by this gem from Proverbs 3:5-6 Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all that you do and he will show you which path to take. And also Romans 8:28: And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
I keep leaning on the same Bible verses because I cannot memorize very many other ones ;) I do know that all of this health mess fits into God's big movie epic somehow. I don't have Jennifer Anniston's part but maybe the part of some extra on the set. I don't know what that overall plan is but I guess I don't have to know.
I'd be ok with all of this if it wasn't for Geoff and the girls. Hope asked me last week why God hadn't healed me when we've been praying for complete healing of my body for years now. Now isn't that a tough question to answer. Ugghh.
Love and peace,
Sofie
Tuesday, October 4, 2011
Blood issues? Are you kidding?
So it's about time I updated everyone with the latest health news. Ugghh. I went to Chapel Hill September 28th expecting to receive another samarium injection to help with my back pain. Unfortunately, my blood work, which has always been described as "fine" just like I look "fine" [how can you be sick, you look fine! I hear that so often] is no longer fine.
Inexplicably, my platelets, white blood cell count, hemoglobin, etc. has been falling. The platelet count, specifically, is in free fall. It's supposed to be somewhere between 150-440 and was 58, last time they checked. My nuclear medicine doctor was willing to give a smaller samarium dose if the platelet count was somewhere near 100 (it was 89 one week which was low but do-able) but not with it at 58. BTW, your body's platelets help to cause blood clotting when you bleed. If the platelet count gets down in the tens and twenties, my oncologist said, you can start spontaneously bleeding out of your nose and gums and it won't stop. You can bleed to death, essentially.
What caused my platelets to drop? We don't know. I was told on the 28th, when my platelets were down at 58, that I probably have metastases in my bone marrow as well as my bones and my liver. With bone marrow mets, your body has a hard time getting your blood counts up (platelets, WBC, hemoglobin, etc) because there are not enough normal (non-cancerous) cells in your bone marrow making good blood. As a result, you are not eligible for most chemotherapies (which suppress bone marrow so you have to have good blood counts to begin with).
Essentially, we are worried that my platelet counts will keep going down. I am tired these days, and I mean tired. I will do one activity a day, such as walking the dog or maybe going to pilates class, and then I return to bed for the rest of the day. And it is HARD to get through a pilates class because I am exhausted by 15 minutes into the class. But anyone who knows me knows that when I give that up I am in trouble because that is my social life! Yesterday's pilates and dog walk caused me to nap for about 4 hours and spend the rest of the day in my bed! So this makes the tired of 6 months ago seem like a walk in the park.
So, anyway, please pray that my blood counts improve. We cannot even fight these new mets with chemo until my blood recovers. Although I am at peace with my disease and the possibility of going to meet my maker (there is no cancer in heaven :) woo hoo!!!) I know that my children and husband need me here. So please continue to pray -- I know many of you already are.
I go back to Chapel Hill October 12 and will have my blood tested again. Let's hope the numbers go up! I will try and report either way after that appointment.
Love,
Sofie
Inexplicably, my platelets, white blood cell count, hemoglobin, etc. has been falling. The platelet count, specifically, is in free fall. It's supposed to be somewhere between 150-440 and was 58, last time they checked. My nuclear medicine doctor was willing to give a smaller samarium dose if the platelet count was somewhere near 100 (it was 89 one week which was low but do-able) but not with it at 58. BTW, your body's platelets help to cause blood clotting when you bleed. If the platelet count gets down in the tens and twenties, my oncologist said, you can start spontaneously bleeding out of your nose and gums and it won't stop. You can bleed to death, essentially.
What caused my platelets to drop? We don't know. I was told on the 28th, when my platelets were down at 58, that I probably have metastases in my bone marrow as well as my bones and my liver. With bone marrow mets, your body has a hard time getting your blood counts up (platelets, WBC, hemoglobin, etc) because there are not enough normal (non-cancerous) cells in your bone marrow making good blood. As a result, you are not eligible for most chemotherapies (which suppress bone marrow so you have to have good blood counts to begin with).
Essentially, we are worried that my platelet counts will keep going down. I am tired these days, and I mean tired. I will do one activity a day, such as walking the dog or maybe going to pilates class, and then I return to bed for the rest of the day. And it is HARD to get through a pilates class because I am exhausted by 15 minutes into the class. But anyone who knows me knows that when I give that up I am in trouble because that is my social life! Yesterday's pilates and dog walk caused me to nap for about 4 hours and spend the rest of the day in my bed! So this makes the tired of 6 months ago seem like a walk in the park.
So, anyway, please pray that my blood counts improve. We cannot even fight these new mets with chemo until my blood recovers. Although I am at peace with my disease and the possibility of going to meet my maker (there is no cancer in heaven :) woo hoo!!!) I know that my children and husband need me here. So please continue to pray -- I know many of you already are.
I go back to Chapel Hill October 12 and will have my blood tested again. Let's hope the numbers go up! I will try and report either way after that appointment.
Love,
Sofie
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