[Caroline]

Jim:

We live in Ontario and I am noticing that the way that things are taken care of here are very different than what I read from all of you in the US. Our Oncologist has a small library in his waiting room. I will browse when we are there next time…Nov 8th, also 2 weeks. I will let you know if I find the book. If not, I would very much appreciate it if you could pick a copy up for me. I think that book would be a big help. Dad eats very little at home. It frustrates my Mom alot. When he comes over here…3 blocks away… I can get him to eat just about anything. Or, when my kids go over to Opa’s house, he will eat what they eat and keep up with them. But my kids are all in their late teens so they have many obligations through the week such as working and highschool/university and Opa goes to bed early so they can’t drop by to make him eat everyday. They try hard and are doing a very good job of supporting him….and me. He loves the pumpkin pie that I bake but won’t touch it anywhere else. I have been sending baking over every few days. Since this past May when my Mom found out that she is a very serious Diabetic, she has a very difficult time spending time in the kitchen….another very sad story. She used to be a master cook/baker and loved to eat her cooking. She tries to cook without eating but every once in awhile, she hurts herself by over indulging. Since my family is large, I cook and bake everyday so I have been trying to send food down without offending my Mom or teasing her with sweets….another dilema. I could slide some things into pumpkin pie, etc. and it probably won’t get noticed. That book would greatly benefit us.

You are all such a great help. I am glad that I found you.

Caroline

[Caroline]

Thanks Sandy

Caroline

[Caroline]

Terri,
Thank you.
I will make a list of the foods you mentioned and will go over and talk to Dad about it all tomorrow. He will appreciate your help.

Caroline

[Caroline]

Thanks Jim,

How about foods? Do you know of any specific foods or supplements that would help out with his RBC? Right now Dad takes 100 mg of Vitamin B-6 and he gets Eprex/Procrit shots weekly, 40 000 units. He started these shots 3 weeks ago and his hemoglobin has risen from 99 to 107. Dr. is pretty pleased since Dad is 79 years old and they didn’t expect any change at all for the first month.
Now Dad has kidney stones which were scheduled to be removed with laser surgery next week but after blood tests 2 days ago, they found that his coagulation factors don’t work properly and his creatinine levels are extremely high. Now he has to meet with a Nephrologist and another Hemotologist to take care of these problems before the Urologist can do the kidney stone surgery. So many “Ologists”. I am thinking that the kidney problems have been present for many years and have added to the CMML.

Dad’s weight has dropped from 185 lbs to 166 lbs since June. We give him a can of Ensure every night before bed and are starting to make him puddings, etc. with homo milk to increase his fats but he has no appetite. I am trying to make sure that the little bits that he does force himself to eat are full of calories and nutrition. I would even like to find some kind of a supplement which may boost his appetite. He isn’t even interested in eating frequent small meals throughout the day. It has become an effort for him to do anything except lay down and sleep.

Any ideas?

Caroline

[Caroline]

Ani, Patti.

Does the raw black sesame seeds and pineapple treatment only apply to platelet problems? My Dad has CMML. His red blood cells are mostly the affected cells. Do you think this could possibly help him too?

Caroline

[Caroline]

Lynne,

As I mentioned last week, I would let you know what the new Home Care Nurse had to say about Eprex. Her views completely contradicted the nurse who came to my parents’ house last week. She agrees with all of the people on this forum who said that the shot burns more if used straight out of the fridge. We need to either let the needle sit out for 20 minutes or so or roll it in our hands for a few minutes to heat the Eprex up a bit. I gave Dad his shot unassisted today and it didn’t hurt him a bit.

Also, after blood tests yesterday, my Dad’s hemoglobin has risen from 99 to 107 in 3 weeks. They are very pleased that the Eprex seems to be doing its job.

The bad part of those tests showed that his Creatinine levels are very high and his Coagulation Factors are not working properly. Now he has to start seeing a Nephrologist, a second Hemotologist and his Oncologist to get these things in order before the Urologist can remove his kidney stones. Dad has one huge stone at the opening of each of his ureters. 3 weeks ago they did an emergency operation and inserted stents in his ureters to allow urine to flow freely around the stones. They assured us that the Eprex did not cause any of these problems and that they existed long before the onset of the Eprex shots 3 weeks ago.

Thank goodness that there are methods of helping people with blood disorders nowadays. My Father-in-law found out that he had Leukemia in 1966 and he died 9 months later because there was just no treatment for the disease at that time. Look how far they have come? My Mother-in-law keeps telling my Dad how happy she is for him that he has the chance to help himself with the aid of treatments like Eprex/Procrit.

I hope that you are feeling better about everything Lynne.

Caroline

[Caroline]

Dear Marie and all of Christopher’s family.

My heart grieves for you. God Bless you as you go through this most devastating of times. Marie, as a Catholic you know that you can still speak to Christopher just like you did when he was alive. May this be of at least a bit of comfort for you.

Caroline

[Caroline]

Barb

I hope for a speedy recovery for your husband. It is so discouraging when you look forward to a method of treatment helping and then you end up getting sick.

Blessings.
Caroline

[Caroline]

Lynne.

Typo…Dad is not 70. He is 79 years old.

Caroline

[Caroline]

Lynne,

I forgot to mention something. When Dad had his blood checked yesterday, his hemoglobin had risen from 99 to 102 after only 2 shots of Eprex/Procrit. Dr. said that he hadn’t really expected much of a result at all since it is still too early for any substantial changes to take place but that it seems to be working because the hemoglobin didn’t decrease. My Dad is 70 years old.

Caroline

[Caroline]

Lynne,

Home Care has been going to my Dad’s to administer his Eprex/Procrit weekly for the past 3 Thursdays. Today my Mom and I had an actual lesson. This nurse told us that we should put the needle in where there is the most meat. We are using Dad’s arms alternately each week. The needle has to be plunged in very slowly and then once it is all in, we have to count to 10 to allow the Eprex to distribute evenly before we remove the needle. Also, she stressed the importance of having the Eprex come straight out of the fridge and not letting it get warm or even room temperature. I mentioned that I know some people who allow the drug to warm up and she said that she was not taught that way. I will ask the nurse again next Thursday when she comes. They always send a different nurse so they probably all have different schools of thought.

Caroline

[Caroline]

Robin,

REMISSION !!! Such a great word. One day at a time. Maybe soon you will be able to reach your Dad again and get through to him.

I know what you mean about that strong man becoming as weak as a kitten. I am noticing that with my own Dad lately. Today at our Oncology appointment they weighed him and he has dropped another 3 pounds in 3 weeks even though he is feeling much better since he started Eprex and his hemoglobin even climbed 3 points. He is becoming forgetful and isn’t feisty like he used to be. He even lets me do all the driving when we go to visits…which at one time was absolutely forbidden for him to be driven around by anyone. That was HIS job. He used to be very active and now he doesn’t even go for his walks for his bad heart anymore. This week he gave up bowling altogether. Bowling was the last activity that he has been doing. He claims that he is just too tired to do anything. I get very upset hearing these things but I have to keep it inside and keep smiling so that I don’t make him feel badly. If I try to look at everything clinically, I can remain calm and composed and put everything in place. When I let the daughter part of me out…she falls apart.

Keep us posted, Robin. I’ll be thinking about you.

Caroline

[Caroline]

I looked up the Light The Night Walk locations here in Canada. There is one location only an hour or so from where we live. Unfortunately, their walk was on the 6th of October and I missed it. I emailed them tonight to tell them that next year my family and I will definitely participate. I believe that this was the first year that Toronto (Mississauga) held a Light The Night Walk.

I am glad that I read all of the postings every day or I would have missed this one. Maybe if there are enough of us from the Toronto area, we can make up a team.

Food For Thought,

Caroline

[Caroline]

Luke and Margaret:

I asked the forum if any Canadians were using Vidaza awhile ago. This is the answer I received. I hope it helps.

“No, it’s not approved here, although it is possible to have it imported through Health Canada on an emergency basis. The hematologist my husband went to before he turned acute, and was referred to Princess Margaret Hopsital, did not know about it until I told him. Subsequently, he was at a conference and learned more about it, but he was not too impressed by it. Hope that helps!”

Caroline

[Caroline]

My heartfelt prayers are with Christopher and your entire family.

God Bless,

Caroline

[Author]

Posts