Hi everyone,

This is a very off-the-bipolar-subject topic, but I thought I would look to you, my bipolar and non-bipolar friends, to ask for some help. My mom was diagnosed with polycythemia vera (a rare blood cancer/disease) and prescribed chemotherapy. I have directed her to the blood disorders message board, but it's not very active. Has anyone here had any experience with or known anyone with this blood disorder or have any advice?

I hope this message isn't blocked because we could sure use some help. I know she's really anxious to talk to someone who's experienced this to ask questions. It's difficult to find any info on it or someone to talk to.

Thank you...:wave:

Hi Gav,

I am so sorry to hear your mom has this diagnosis. I can imagine how anxious she is about it. I am sorry to say I have never even heard of it...but thought I'd respond so this would get bumped up on the board. Maybe Goody will have heard of it. She is off visiting her critically ill brother and I think is returning tomorrow night if it's ok to leave.

Good luck in finding some help for her.:angel:

:wave: Tsohl

As always, tsohl, you are so caring and kind. I appreciate that you're looking out for me and my mom. I know what you mean about having never heard of this kind of cancer. Until Friday, neither had we! It appears to be similar (but not similar) to leukemia in that it's a blood cancer that affects the marrow's ability to make "normal" blood. But it's different - it has been described as a water hose that pumps water that turns into one that pumps syrup, thickening the blood so much so that it can easily cause stroke or heart attack before the actual cancer does.

What's scary is that the doctor went straight to the chemo treatment rather than following the normal treatment procedures we've both read about - where chemo is the last treatment. That's what's confusing us because everything we've read says that it's not normal procedure, but her doctor is a renowned specialist in this disease apparently.

Anyway, thanks so much for your thoughtfulness, tsohl. :)

As always, tsohl, you are so caring and kind. I appreciate that you're looking out for me and my mom. I know what you mean about having never heard of this kind of cancer. Until Friday, neither had we! It appears to be similar (but not similar) to leukemia in that it's a blood cancer that affects the marrow's ability to make "normal" blood. But it's different - it has been described as a water hose that pumps water that turns into one that pumps syrup, thickening the blood so much so that it can easily cause stroke or heart attack before the actual cancer does.

What's scary is that the doctor went straight to the chemo treatment rather than following the normal treatment procedures we've both read about - where chemo is the last treatment. That's what's confusing us because everything we've read says that it's not normal procedure, but her doctor is a renowned specialist in this disease apparently.

Anyway, thanks so much for your thoughtfulness, tsohl. :)

Amy....
I don't know a lot about the Dx of Polycythemia vera only that it is an abnormal increase in blood cells (primarily red blood cells) resulting from excess production by the bone marrow.

Treatment objectives is to improve all sysmptoms, prevent and treat later complications, correct imbalance, adjust the immune system and most importantly to boost energy and strong body for better health and quality of life. I'm sure that the chemo treatment that your Mom's specialist is using will improve all her sysmptoms and take care of what I mentioned above.

As with all the posters here at the "Health Boards",we pray for your Mom's recovery;and wish you our loving support.

Carry On,

How sweet of you EYES for learning about this and for the information on my (and my mom's) behalf. I've been reading up on it extensively over the past two days and have learned quite a bit about it, but the chemo thing as the first treatment option her doctor selected had us baffled. I had also read that most sufferers experiencing symptoms of this disease (some are asymptomatic) die within two years of diagnosis. Of course, this scared me to death! On the other hand, I also read that it is very manageable with proper treatment and careful monitoring.

Thank you again for your wisdom and intervention. It is sincerely appreciated!

Hi, Gav:wave: I just wanted to pop on and tell you how sorry I am to hear all that your mom and family are going through. To be honest I am not all too familiar with polycythemia but will do some research and get back to you with anything that I can find that may help you out.

Meanwhile, please know that your mom and your family are in my thoughts and prayers.

Love ~ Goody:angel: :wave:

Thanks, Goody! All of you have been so supportive and kind. It seems like I have not stopped reading and researching and looking for information about this disease all weekend, pouring over anything and everything I can find. It's difficult to understand because there are so many conflicting medical opinions about the proper treatment and mortality rates. But one thing seems clear: if you don't do anything, you will die within 2 years. It's really frightening. However, another item left on the agenda is to call the Leukemia and Lymphoma Society tomorrow to see if they have some answers and info for me as to what we can expect and do in the meantime.

Anyway, I think at this point I've got my mom enough information on it and feeling comfortable enough to proceed with treatment. Also, since I've shared everything I've learned with her, got her involved in other support groups with people who have and are there going through the same thing, she's armed with the right questions for her doctor tomorrow and to talk to her cardiologist as well. It just all happened so fast, and it doesn't help that she's all alone and I'm 1000 miles away. But, I'm about to move back with my husband once I've graduated and I'll be in a better position to help her.

Again, thank you all for your kind words and concern. I can't tell you how much it means to me! :angel:

Hi, Gav:wave: I know how difficult it is to be away from a loved one who could use your support. My brother's health has declined significantly with a rare disorder in which he has gone above and beyond what any doctor has seen or can treat. I live about 5 hours from hims and feel so helpless at times....how I wish that we lived closer so that I could do more. But I have learned to do all that I can from a distance.....just making sure that I talk to him each day and talk about things that will get his mind off of what he is going through day in and day out helps. Your mom is lucky to have a daughter who cares so much and has gathered as much information so that she can go into her doctor's appointment all prepared.

Now I would like to talk to you about something else....please make sure that you take good care of yourself during this time. We all know what extra stress can do even with the best meds in place so try your very best to remember how important it is to get your sleep, eat right and keep the stress levels down as low as possible. You are almost done with your studies and must have alot of finals and last minute projects coming up so PLEASE make sure that you take one thing at a time so that you don't have any relapses. You have come so far and we want you to continue feeling well.

That is good that you will be moving closer to her after you graduate....was that already in your plans or something you decided on after hearing this news???

We are here for you....just let us know if we can be of any help. You and your family are in my thoughts and prayers.

Love ~ Goody:angel: :wave:

Hi Goody,

Don't worry, I won't let this situation aggravate my condition. Typically, I handle crises pretty well as long as they aren't happening to me. And even when they are happening to me, as long as I can come up with a plan of action and don't feel helpless, I can handle it. I feel that I've been able to help her quite a bit, even if I am not physically there. I was able to get her signed up to several active support groups to meet people dealing with the same condition and treatment and she has so far had lots of replies to her questions, which has really seemed to help her get over the hump of fear, accept the diagnosis, and move forward with treatment. She did her first chemo treatment yesterday and so far, so good. She was able to work through the day without incident, which I think made her more optimistic about its manageability. Pray that the side effects don't overwhelm her and that she can continue with it over the long term. She has more tests to undergo with her cardiologist this week and I will keep you posted about what's going on. Her hematologist/oncologist did tell her that she has an additional leukemia-related disease on top of this, but that the treatment should manage that as well.

I sincerely appreciate all of your care and concern, Goody and all of you. It has really helped. It's such a rare disease that it's difficult to get any definitive answers about what to expect and what is to be done. It's a chronic illness with no cure, so studies are still being done. Different doctors choose different treatments. But the good news is that the chemo treatment is not the only option and that it is NOT the last resort, which was a concern of mine and hers - like what if it didn't work; is that all there is? It's not.

Anyway, thank you again. And Goody, if you find anything in your research that you think I haven't considered from an objective point of view, please let me know, like EYES was so kind enough to do. Thank you all! :angel: