At my last appointment with the hematologist/oncologist my blood pressure was high. Not sure why, I have never had high blood pressure before. The doctor said that high blood pressure could be caused by many things: how much water and salt you have in your body, the condition of your kidneys, nervous system, or blood vessels, the levels of different body hormones, weight, etc. I checked my blood pressure today and it was fine so hopefully it was just a one time thing.
I am also experiencing Parenthesis (pins and needles) sensations again, always in my left arm. I am taking my meds everyday so I am not sure why I am still experiencing these sensations. Sometimes, it feels like little bugs are crawling under my skin - UGH!
I have an appointment with the doctor during the first week of May. I will post an update after my appointment.
I hope everyone is doing well.
- Shayna
April 27, 2011
April 18, 2011
Passover
For those who celebrate Passover - Happy Kosher Passover to you and your family!
For those who want to know more about Passover, please click here:
http://www.aish.com/h/pes/t/g/48959286.html
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For those who celebrate Easter - I hope you have a wonderful holiday and don't eat too many chocolate bunnies! =)
- Shayna
8 Month Old Baby Hears For The First Time - AMAZING!
Hydroxyurea, Exhaustion and Gratefulness
For those of you reading my blog you will be able to note my post about being non-compliant with medication, primarily taking my Hydroxyurea (HU) everyday!
I saw the doctor two weeks ago and he made me understand why I need to take my meds everyday. I have been very good and I have been taking my HU, Hemex and baby aspirin everyday. I have also noticed that my level of exhaustion has increased astronomically!
I have mentioned to the doctor on many occasions that I have been feeling extreme fatigue and most of the time he says it could be from anything but it's not from the HU.
I found the information listed below about Hydroxyurea on Wikipedia:
http://en.wikipedia.org/wiki/Hydroxyurea
Reported side-effects are: drowsiness, nausea, vomiting and diarrhea, constipation, mucositis, anorexia, stomatitis, bone marrow toxicity (which may take 7–21 days to recover after the drug has been discontinued), alopecia (hair loss), skin changes, abnormal liver enzymes, creatinine and blood urea nitrogen.
Due to its effect on the bone marrow, regular monitoring of the full blood count is vital, as well as early response to possible infections. In addition, renal function, uric acid and electrolytes, as well as liver enzymes, are commonly checked.
Hydroxycarbamide has been used primarily for the treatment of myeloproliferative diseases, which has an inherent risk of transforming to acute myeloid leukemia. There has been a longstanding concern that hydroxycarbamide itself carries a leukemia risk, but large studies have shown that the risk is either absent or very small. Nevertheless, it has been a barrier for its wider use in patients with sickle-cell disease.
How can my doctor just dismiss my fatigue? I am sure it's because he feels the benefits of the HU, outweigh the fatigue. I know that the doctor is right about the meds but it would be nice for my fatigue to be acknowledged as more than just something in my head.
Also, of all the symptoms listed above, I have the following: drowsiness, constipation, and my hair is thinning......but
I AM ALIVE!
I have not had a major stroke, heart attack, blood clot, etc. The medication is working to bring my platelet count down to a safe level.
I am upset about having to take chemo pills everyday but I am grateful for the results.
Does anyone else out there taking HU, experience extreme fatigue?
Thank you for letting me share my journey with you and thank you for sharing yours with me!
I hope everyone is doing well -
Shayna
I saw the doctor two weeks ago and he made me understand why I need to take my meds everyday. I have been very good and I have been taking my HU, Hemex and baby aspirin everyday. I have also noticed that my level of exhaustion has increased astronomically!
I have mentioned to the doctor on many occasions that I have been feeling extreme fatigue and most of the time he says it could be from anything but it's not from the HU.
I found the information listed below about Hydroxyurea on Wikipedia:
http://en.wikipedia.org/wiki/Hydroxyurea
Reported side-effects are: drowsiness, nausea, vomiting and diarrhea, constipation, mucositis, anorexia, stomatitis, bone marrow toxicity (which may take 7–21 days to recover after the drug has been discontinued), alopecia (hair loss), skin changes, abnormal liver enzymes, creatinine and blood urea nitrogen.
Due to its effect on the bone marrow, regular monitoring of the full blood count is vital, as well as early response to possible infections. In addition, renal function, uric acid and electrolytes, as well as liver enzymes, are commonly checked.
Hydroxycarbamide has been used primarily for the treatment of myeloproliferative diseases, which has an inherent risk of transforming to acute myeloid leukemia. There has been a longstanding concern that hydroxycarbamide itself carries a leukemia risk, but large studies have shown that the risk is either absent or very small. Nevertheless, it has been a barrier for its wider use in patients with sickle-cell disease.
How can my doctor just dismiss my fatigue? I am sure it's because he feels the benefits of the HU, outweigh the fatigue. I know that the doctor is right about the meds but it would be nice for my fatigue to be acknowledged as more than just something in my head.
Also, of all the symptoms listed above, I have the following: drowsiness, constipation, and my hair is thinning......but
I AM ALIVE!
I have not had a major stroke, heart attack, blood clot, etc. The medication is working to bring my platelet count down to a safe level.
I am upset about having to take chemo pills everyday but I am grateful for the results.
Does anyone else out there taking HU, experience extreme fatigue?
Thank you for letting me share my journey with you and thank you for sharing yours with me!
I hope everyone is doing well -
Shayna
April 15, 2011
Hemex - Prescription Iron / Vitamin Pills
I called CVS today to pick up my prescription for Hemex which is an Iron / vitamin pill. They said that they are out of the medication and that the manufacturer is so far behind with making the drug that they will not have any more until June! WOW!
Thank G-D my doctor had some samples to give me but how unprofessional on the manufacturers part. Also, the doctor said if I run out before they can get more, I can take over the counter Iron pills - but they make my stomach hurt, a lot!
What if this would've been my chemo meds, my Hydroxyurea? It makes me wonder and it makes me feel more than a little bit nervous!
Other than this, I am taking all my meds, on time and every day. All the meds make me very tired and I am still feeling a lot of pins and needle sensations and they're always on my left side.
Busy getting ready for Passover in our house, it's so crazy the amount of stuff that has to be done for eight days! One of the best things about the prep for the holiday is that, if your like me, a procrastinator - you have no choice, you have to do your Spring cleaning. =)
I hope everyone is doing well -
Shayna
Thank G-D my doctor had some samples to give me but how unprofessional on the manufacturers part. Also, the doctor said if I run out before they can get more, I can take over the counter Iron pills - but they make my stomach hurt, a lot!
What if this would've been my chemo meds, my Hydroxyurea? It makes me wonder and it makes me feel more than a little bit nervous!
Other than this, I am taking all my meds, on time and every day. All the meds make me very tired and I am still feeling a lot of pins and needle sensations and they're always on my left side.
Busy getting ready for Passover in our house, it's so crazy the amount of stuff that has to be done for eight days! One of the best things about the prep for the holiday is that, if your like me, a procrastinator - you have no choice, you have to do your Spring cleaning. =)
I hope everyone is doing well -
Shayna
April 7, 2011
If Moses Had Facebook / A Laptop
Loved this - I have never laughed so hard!
Thank you to: http://jewishmom.com/ this was great!
Enjoy - Shayna
April 5, 2011
Non Compliant With Medication - Not A Good Thing To Be!
I went to the hematologist today to check my platelet counts, etc. My count went back up from 500,000 to 715,000 and my iron was very low! Also, for the first time, I had slightly high blood pressure. I have had some trouble remembering to take my meds and I have also just skipped them from time to time (I know, I know, read on).
I take 1500 mg a day of Hydroxyurea (the chemo med) and it makes me so tired! I feel like I could sleep all day and night. Some days, I don't want to feel so exhausted! I thought it would be okay, if I missed/skipped a dose here and there but according to the doctor and my platelet count, it's NOT!
The doctor looked mad at me and I started crying. I told him about the fatigue and I told them that I don't want to take these meds for 20 - 30 years and increase my odds for Acute Leukemia down the road. I told him I want to see my grandchildren. His response was that if I don't start taking my meds properly, I could have a stroke or blood clot and not be around for my kids! I got the message!
Also, he told me that the reason I am so tired is probably because my iron count is low, not the Hydroxyurea.
My husband is going to remind me everyday and set my cell phone to remind me as well. My next appointment is in a month, hopefully my numbers will be better.
I was trying to forget about the reality of my disease but I guess your body will always find ways to remind you!
I hope everyone is doing well. Every day is a new day!
- Shayna
I take 1500 mg a day of Hydroxyurea (the chemo med) and it makes me so tired! I feel like I could sleep all day and night. Some days, I don't want to feel so exhausted! I thought it would be okay, if I missed/skipped a dose here and there but according to the doctor and my platelet count, it's NOT!
The doctor looked mad at me and I started crying. I told him about the fatigue and I told them that I don't want to take these meds for 20 - 30 years and increase my odds for Acute Leukemia down the road. I told him I want to see my grandchildren. His response was that if I don't start taking my meds properly, I could have a stroke or blood clot and not be around for my kids! I got the message!
Also, he told me that the reason I am so tired is probably because my iron count is low, not the Hydroxyurea.
My husband is going to remind me everyday and set my cell phone to remind me as well. My next appointment is in a month, hopefully my numbers will be better.
I was trying to forget about the reality of my disease but I guess your body will always find ways to remind you!
I hope everyone is doing well. Every day is a new day!
- Shayna