[Britt]

I’m sorry for your pain and loss Phyllis. Words won’t make you feel better, but knowing we all care and feel your sense of loss hopefully means something. Be safe now, take care of you.
Britt

[Britt]

I want to thank all of you for sharing your information with me.
Hello Sandy, I was born and raised in San Rafael. I’ve spent many a summer at Lakeport. It’s way too hot for me up there. I am so sorry that your Joe didn’t make it. I’m impressed that you are still a member. I bet you have been a big help to many people.
Britt

[Britt]

Dear Everyone: Thank you for your responses. I do appreciate you all and will follow your leads.
Britt

[Britt]

Hi Willie, Has your wife been to Seattle? I see you live in Sacramento. Is your wifes’ condition secondary? Patrick’s is from the treatment he received for non Hodgkin’s lymphoma. His last treatment for that was only a year and a half ago and now this. I don’t know what w/Sweets means. And may I ask what DLI means?
Britt

[Britt]

Hi, Patti is 100% correct about doctors not having any faith in natural supplements. Since you’ve done the groundwork that your busy doctor doesn’t have time to do (especially if he is a skeptic), you can print out the information and give it to him if you feel you need is okay. However, give him a condensed version. Also, the pharmacies can run a search to see if it would have any negative effect with the medications she is currently taking. Good luck.
Britt

[Britt]

Hi Neil: Patrick had a blood test again today and his numbers are as follows:
wbc 1.8
Hgb 10.2
Hematocrit 29.5
Plate 9 – 11
He is scheduled for an infusion of platelets tomorrow. I told them today I wanted Patrick to be seen by Stanford. Patrick’s onocologist will be in Thursday and Patrick has an appointment. They will start the paperwork going. I hope they are speedy. They admit that what they have done so far is not working.
Britt
————————–
Patrick, my partner age 62, dx MDS RARS secondary. Almost weekly transfusions since 3/13106. Tried Procrit, no luck. Oncology nurse stated that Aranesp had the exact same chemical make up as Procrit.

[Britt]

Dear Maueenh: I’m sorry I can’t offer you anything except a hearty welcome to this forum. The people I have corresponded with are the best. I’m just way too new myself to be able to answer any questions, but I wish you and your father all the very best.
Britt

[Britt]

Hi again Caroline,
Please do see if they have any such forms then once he signs it (you might consider having the signature notarized) you can carry it with you at all times. What about Durable Power of Attorney for Healthcare? Would your dad mind that? It is my understanding that they are different for the different providences of Canada. Make sure you get the correct form. Better yet, if you know an attorney, have him/her draw one up for you. Make sure your dad has a copy at home, perhaps on the refrigerator as well as one in his wallet. You shouldn’t have to go for days without being able to get information on your father’s condition, unless of course your dad doesn’t want you to which doesn’t appear to be the case. You might even find links online where you can ask legal questions and attorneys will answer for free. It can’t hurt to check it out. Let me know if you come up with something that helps you out.
Good luck to you, your dad and your family.
Britt

[Britt]

Dear Caroline: I can only imagine how distraught you must be over all of this, especially considering your past experiences. Why is your dad considering his GP’s advice without speaking to his oncologist first? Does Canada have ‘authorization’ forms that your dad could sign authorizing them to give you any medical information you request concerning his health and health records? Just a thought.

Please keep us apprised of what transpires from here. Shame on his GP for being too pig headed and egotistical (or is that stupid?) to consult the oncologist first. Who does he think he is? God?

Sorry, I must have gotten up on the wrong side of the bed this morning, perhaps I will go back and try again.

Britt

[Britt]

Dear Neil,
Patrick’s doctor is going to have him see a pychiatrist about getting on a mood elevator. I am asking around and surfing to find out more about Dr. Greenberg. I’m also feeling Patrick out regarding it. I have to go now, much more to say, but no time. I’m drowning in paperwork from all these different agencies.
Britt

[Britt]

Dear Everyone who has been so kind to give me feed back. God bless each and everyone of you and your loved ones. I don’t know any of you yet you extend yourself in compassion and support and you all touch my heart very much. I just want you all to know that!!

Patrick received 2 units of blood on Thursday. The following were his scores for that day.
WBC 1.8
Red 3.0
HGB 8.6
Hematocrit 24.9
Platelets 14.0 (AA)
Neutrophils % 50.0

This time he did receive the irradiated/filtered blood as far as I can tell. I know they said it was definitely filtered. They claim all their blood is filtered. So I need to find out what irradiated means.

Friday afternoon we did go to the dog park for a little while and had tacos from Jack in the Box, hey that’s what he wanted!! He ate 4 and said he could have eaten more. A good sign, I think. He stayed awake most of the day and we actually went out to dinner and didn’t get home until 10 p.m. This was a biggie! However, today he feels horrible, it’s 2:45 and he is still sleeping and hasn’t eaten anything. However, we are supposed to go to dinner tonight for his birthday. Hopefully he will want to go when I wake him up.

I’m still waiting for answers to some of the questions I asked early on in the week. I know they are swamped, but I’m going to press on Monday when he goes back for another blood test.

Britt aka Susan
—————————-
Patrick, my partner age 62, dx MDS RARS secondary. Almost weekly transfusions since 3/13106. Tried Procrit, no luck. Oncology nurse stated that Aranesp had the exact same chemical make up as Procrit.

[Britt]

Dear Neil,
I am going to show Patrick your response and hope he will seriously consider going to Stanford for that second opinion. Is there a way I can get something like a resume regarding Dr. Greenberg experience with MDS? Patrick is a stubborn person (and loyal to his doctor) and I think I will be best off if I am loaded with information/amunition before I approach him. Sometimes that’s not even good enough. By the way, if the lab reports only give neutrophil in a percentage how do I find out the count? Monday Patrick told the nurse that he wants a prognosis. When I see him sleeping so much and exhausted from getting in and out of a chair, I begin to wonder if he isn’t going to sub scum to this soon myself. He looks pasty all the time. I wonder how much of the exhaustion has to do with depression? Which I addressed to his doctor and in turn he told Patrick to reduce his Prozac and take all meds at night time. I was thinking an increase was in order. However, now I am told they are going to ask him if he wants to see a Psychiatrist to get a mood elevator. It seems he wants an expert in that field to manage those type of meds, which I can understand.
Thank you again……..there just aren’t words enough. Hopefully, there will be a day when I can be somewhat helpful to fellow subscribers.
Britt

“Things which matter most must never be at the
mercy of things which matter least”
–Johann von Goethe
——————————-
Partner (62) dx secondary MDS RARS March 06 Kaiser. Infusions approx weekly, given Revlimid. After 3 weeks platelets fell to 32, taken off revlimid. At 22 received 1 unit plt, 6-6-6 plt count 8, rec’d 1 unit plt. Taking Exjade for iron overload.

[Britt]

Thank you Lucy, the infusion dept already told him that they will be doing that in the future. I didn’t know it caused chills and fever too. I guess Patrick hasn’t experienced that one. That’s a plus.

——————-
Partner (62) dx secondary MDS RARS March 06 Kaiser. Infusions approx weekly, given Revlimid. After 3 weeks platelets fell to 32, taken off revlimid. At 22 received 1 unit plt, 6-6-6 plt count 8, rec’d 1 unit plt. Taking Exjade for iron overload.

[Britt]

Hi Neil: I haven’t gotten all my answers yet regarding Patrick’s condition, but I’ve made a start. His doctor said he ‘thinks’ it’s RARS. I still need to find out his blast count and IPSS score which the oncology nurse is working on for me. Also it appears he has not been getting irradiated/filtered blood. I asked if we had a right to request it and I was told yes, so I did.
Here are is scores from yesterday. Of course he got a unit of platelets yesterday and had a reaction to it. He gets another blood test tomorrow.
WBC 1.8
RBC 3.33
Hemoglobin 9.5
Hematocrit 27.8%
RDW 15.7% high
Plt 8.

Neutrophils 46%
Lymphocytes 43%
Monocyte 10%
Eosinophil 0%
Basophil 1%

We will see what tomorrow brings. However, I’m at a loss as to his exhaustion if his red blood cells weren’t ‘critical’
Britt

[Britt]

Hi Patti:
Thank you for the information on vitamin K. Also, I do make him smoothies, as well as custards for protein and sometimes he enjoys a good steak.

I will be getting his records soon and I’ll be able to know exactly how often he has been getting blood. Yesterday his Blood count was okay but his Platelets were at 8. They gave him a unit of platelets and he had a reaction (hives and rash.) They gave him benedryl and that made the hives go away after 3 injections.
Britt

[Author]

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