Hi not feeling great blood numbers very low an continue to get many transfusions so in my opinion the chemo hasn’t gone on upswing yet which worries me an thought of taking it again an putting me in Pancytopenia is not one I’m lookin forward tp
Hi Howard. What has your hematology oncologist said about your continual low blood counts after your first treatment? Usually by now, I agree, they should be coming up to normal.
You’ve had transfusions but have you had any medication to help boost your white blood count?
Hang in there…I know it’s really a bit scary when you’re not seeing any improvements. The goal of that chemo is to knock down the cancer cells in the blood. Unfortunately it also knocks down the other blood cell numbers too and it can take a while for them to all regenerate. Sometimes it’s fast enough to be on a set schedule of every 28 days. But like your doctor said, it can take 6 or more weeks.
The antibiotics are acting, in part, as temporary immune system while yours isn’t up to par right now. If you have the stem cell transplant, you’ll be on antibiotics, an antiviral and anti fungal medication for quite a while until the new immune system you acquire from a donor matures and is robust enough to protect you. Sounds like a lot, but it wasn’t bad and you get used to it.
Are you having any side issues with the antibiotics? Are you eating any yogurt or taking probiotics? (Yogurt should be eaten at least 2 hours after you take it or 3 hours before ).
Thanks for your comments an info yes pretty nervous about it but I have to go for it an stay strong an hopefully come out on other side an yes u have to trust your docs an the team
Good morning, @joycek. I wanted to stop by to see how you’re doing and where you are in your current treatment for AML? Any news about a stem cell transplant?
Dell,
I am a Survivor of Acute Myeloid Leukemia (AML); I was diagnosed at age 40. Treated in Puyallup WA.
The first thing I can recall after the Bone Marrow Biopsy confirmed AML - I was informed as to the nature of such cancer means a person is a Hemophiliac/bleeder, and the Immune System is suppressed/gone. I was told not to do anything that would put my life at further risk such as
gardening, eating fruits, being around children, animals, sick people, even reading magazines... all things that transfer parasites, germs, etc.
I was hospitalized, a surgery placed a "Hickman Catheter" beneath the clavicle bone (to secure) into the Aorta; the valve is bandaged upon the external upper chest. The Hickam Catheter is used to administer Chemo, Pain Meds, Blood and Plasma Transfusions.
Chemo will be determined by the Oncologists; chemotherapy is customized to the patient and from what I've experienced no person can truly speak to what another person will receive or how they will tolerate it. I can tell you that my husband (at the time) was told to get my affairs in order and a Priest gave me my last rights... 14 years ago. The advance the medical world has made to treat this cancer is astounding.
You will learn keywords and phrases:
Blood counts
Induction is the Chemotherapy that is used to put cancer into Remission
Heparin an anticoagulant used to keep the Hickman Catheter lines open and clean
Neutropenia, Neutropenic, Neutrophils: these words are associated with White Blood count usually in reference to Suppressed Immune System
Potassium levels in my case dropped frequently. I was often admitted to the Hospital for Blood Transfusions, and Plasma Transfusions to raise my Potassium.
(if I remember correctly, it's very difficult to remember)
In my case, I was in the hospital receiving Chemotherapy/treatment for 1 month. Bloodwork was taken frequently to take "Counts"... close monitoring... even a cold/flu receives attentive monitoring to ensure blood vessels haven't burst in the brain during a sneeze
I kept the temperature in my room at a very cool level. So much so that the nurses didn't like it. It was instinctual / what felt best for me. The chemo makes you feel overheated. I believe the cool temperature contributed to the absence of nausea.
I kept my mind on higher things and didn't think of having cancer. I asked for a radio and kept it on soft jazz (I don't even listen to jazz), the soothing instrumental music helped keep the mind calm and low stress enables regeneration
Depression is expected but I don't remember going through it because I kept myself distracted and created small hobbies: crochet projects, even bought some coloring books and crayons at the Dollar Store...
I think Depression is a high risk to the Family members of the patient, so take time to give yourself the breathing room and grounding you need to keep your body and mind sturdy
There was a talk with my Oncologist about Bone Marrow Transfusion; I didn't go that far.
My name is Nicollissa, I go by Nicol (Nicole). I will respond ASAP to any messages from you.
Warm Embrace
Thank you Nicole this is so helpful. Very dear friend was just diagnosis with AML. I want to support her through this tough journey. Any suggestions you can share - dos and donts for caregivers??
Hi @joycek, it’s been a while since we’ve talked and I was wondering how you’re doing. Several months have passed since your diagnosis with AML. I know you had a bone marrow biopsy in April. Was there a determination of a gene mutation with the AML? Are you undergoing treatment?
Hi Jan8, I just wanted to pop in today to see how you are. Have you spoken anymore about the possibility of a transplant with your oncologist or gotten a second opinion?
I would just like to thank everyone who responded to my emails about my AML diagnosis at the beginning of this year. I was so scared, afraid, and depressed. Your encouragement gave me hope and I'm happy to say that next week I'll be entering the hospital for a stem cell transplant. I have tried my best to focus only on joy and gratitude but must admit getting nervous now. I was given a binder of information to expect, but I really don't want to know. I'll experience it as it happens. Thanks again, and please send happy thoughts and prayers my way.
Jan8
I would just like to thank everyone who responded to my emails about my AML diagnosis at the beginning of this year. I was so scared, afraid, and depressed. Your encouragement gave me hope and I'm happy to say that next week I'll be entering the hospital for a stem cell transplant. I have tried my best to focus only on joy and gratitude but must admit getting nervous now. I was given a binder of information to expect, but I really don't want to know. I'll experience it as it happens. Thanks again, and please send happy thoughts and prayers my way.
Jan8
Hi Jan, This is such wonderful news to hear. You’ve gotten through the treatment for AML and now heading for transplant and the rest of your life. ☺️
I know @edb1123@kt2013@alive will be as emotional as I am for your opportunity for a 2nd chance at life. In fact, I just celebrated my 4th Re-birth Day 2 days ago! I would absolutely not be alive if I hadn’t had the transplant. At this moment, I’m sitting on the deck watching the sun dance on the lake. It’s “happy hour” and though my drink of choice now is Bubbly water, I’ll toast to your successful transplant!
I think you’re making great choice by not reading the binder full of information. It all sounds so scary but in reality most of it won’t apply to you and you’ll deal with whatever happens when or if it happens. Your team will get you through everything!
Most importantly, learn to trust your transplant team. Follow their directions and let them do the worrying for you.
I wish you all the best and please know that we are all here should you have any questions. We’ve walked this same walk and had the same fears. Hugs and positive thoughts!!
Where will you have the transplant? Do you have to relocate for a few months?
And of course…your donor? Any info?
Hi Jan, This is such wonderful news to hear. You’ve gotten through the treatment for AML and now heading for transplant and the rest of your life. ☺️
I know @edb1123@kt2013@alive will be as emotional as I am for your opportunity for a 2nd chance at life. In fact, I just celebrated my 4th Re-birth Day 2 days ago! I would absolutely not be alive if I hadn’t had the transplant. At this moment, I’m sitting on the deck watching the sun dance on the lake. It’s “happy hour” and though my drink of choice now is Bubbly water, I’ll toast to your successful transplant!
I think you’re making great choice by not reading the binder full of information. It all sounds so scary but in reality most of it won’t apply to you and you’ll deal with whatever happens when or if it happens. Your team will get you through everything!
Most importantly, learn to trust your transplant team. Follow their directions and let them do the worrying for you.
I wish you all the best and please know that we are all here should you have any questions. We’ve walked this same walk and had the same fears. Hugs and positive thoughts!!
Where will you have the transplant? Do you have to relocate for a few months?
And of course…your donor? Any info?
Congratulations to @jan8 on your upcoming transplant! After all you’ve been through, I think you will find the actual transplant process to be anticlimactic! Mine took a total of 45 minutes and then they let me go home! 😊 Of course I had to go to the clinic every day afterwards but it was surprisingly quick and easy. I will celebrate my 3rd re-birthday on July 22nd, and I am living a normal life - golfing and pickleball! Best wishes to you and I look forward to hearing how it goes for you!
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Hi Howard. What has your hematology oncologist said about your continual low blood counts after your first treatment? Usually by now, I agree, they should be coming up to normal.
You’ve had transfusions but have you had any medication to help boost your white blood count?
Ya doc says sometimes it takes longer 6 weeks or more an no medications just antibiotics to help ward off infection since my wbc are so low
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1 ReactionHang in there…I know it’s really a bit scary when you’re not seeing any improvements. The goal of that chemo is to knock down the cancer cells in the blood. Unfortunately it also knocks down the other blood cell numbers too and it can take a while for them to all regenerate. Sometimes it’s fast enough to be on a set schedule of every 28 days. But like your doctor said, it can take 6 or more weeks.
The antibiotics are acting, in part, as temporary immune system while yours isn’t up to par right now. If you have the stem cell transplant, you’ll be on antibiotics, an antiviral and anti fungal medication for quite a while until the new immune system you acquire from a donor matures and is robust enough to protect you. Sounds like a lot, but it wasn’t bad and you get used to it.
Are you having any side issues with the antibiotics? Are you eating any yogurt or taking probiotics? (Yogurt should be eaten at least 2 hours after you take it or 3 hours before ).
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1 ReactionWould like to hear from others with MDs an Pancytopenia an treatment they are receiving
Good morning, @joycek. I wanted to stop by to see how you’re doing and where you are in your current treatment for AML? Any news about a stem cell transplant?
Thank you Nicole this is so helpful. Very dear friend was just diagnosis with AML. I want to support her through this tough journey. Any suggestions you can share - dos and donts for caregivers??
Hi @joycek, it’s been a while since we’ve talked and I was wondering how you’re doing. Several months have passed since your diagnosis with AML. I know you had a bone marrow biopsy in April. Was there a determination of a gene mutation with the AML? Are you undergoing treatment?
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Helpful -
Hug
1 ReactionI would just like to thank everyone who responded to my emails about my AML diagnosis at the beginning of this year. I was so scared, afraid, and depressed. Your encouragement gave me hope and I'm happy to say that next week I'll be entering the hospital for a stem cell transplant. I have tried my best to focus only on joy and gratitude but must admit getting nervous now. I was given a binder of information to expect, but I really don't want to know. I'll experience it as it happens. Thanks again, and please send happy thoughts and prayers my way.
Jan8
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1 ReactionHi Jan, This is such wonderful news to hear. You’ve gotten through the treatment for AML and now heading for transplant and the rest of your life. ☺️
I know @edb1123 @kt2013 @alive will be as emotional as I am for your opportunity for a 2nd chance at life. In fact, I just celebrated my 4th Re-birth Day 2 days ago! I would absolutely not be alive if I hadn’t had the transplant. At this moment, I’m sitting on the deck watching the sun dance on the lake. It’s “happy hour” and though my drink of choice now is Bubbly water, I’ll toast to your successful transplant!
I think you’re making great choice by not reading the binder full of information. It all sounds so scary but in reality most of it won’t apply to you and you’ll deal with whatever happens when or if it happens. Your team will get you through everything!
Most importantly, learn to trust your transplant team. Follow their directions and let them do the worrying for you.
I wish you all the best and please know that we are all here should you have any questions. We’ve walked this same walk and had the same fears. Hugs and positive thoughts!!
Where will you have the transplant? Do you have to relocate for a few months?
And of course…your donor? Any info?
-
Like -
Helpful -
Hug
1 ReactionCongratulations to @jan8 on your upcoming transplant! After all you’ve been through, I think you will find the actual transplant process to be anticlimactic! Mine took a total of 45 minutes and then they let me go home! 😊 Of course I had to go to the clinic every day afterwards but it was surprisingly quick and easy. I will celebrate my 3rd re-birthday on July 22nd, and I am living a normal life - golfing and pickleball! Best wishes to you and I look forward to hearing how it goes for you!
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