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Is anyone taking less than 100 mg Sprycel?


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#41 Judy2

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Posted 15 February 2012 - 04:20 PM

Hi Pam South,

I was wondering where you were, I missed you. I am sorry you have to deal with all this insurance stuff. It is enough to deal with CML, you shouldn't have these bureaucratic complications  on top of it. I am glad Gleevec is working for you but tell me about your chronic pain. Are you referring to muscle pain? I do know what you mean about tiring easily, I have the same problem.

I will definitely stay on Sprycel, as long as it works for  me, which we really won't know for another few months. I am able to manage the side effects with 5mg Prednisone a day. As far as the Wegener's, there is a percentage of people who can do well without continuous treatment. My doctor will keep watch on my creatinine as well as other blood tests and if the Wegener's starts to come back then I will have to resume my treatment. All in all I think things are going well, my shingles are much better, I am able to manage Sprycel side effects and my Wegener's is in remission. Although, my angioedema is acting up, I think this is triggered by Sprycel. Hopefully, Allegra will take care of that.

Pam, it was nice to hear from you.

Judy



#42 pamsouth

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Posted 15 February 2012 - 10:10 PM

Judy2,  You asked about the chronic pain.  Well an example.  Would be I went to the grocery store today to buy some healthy food.  Well I can not lie, a couple of not so healthy food, in small quantities, like 2 chocolate donuts with peanuts & 3 chocolate chip cookies to share with my hubby.

Then I logged on the web to check email.  Then I cooked some Chile, I love my homemade chili in the winter.  Anyhow I am now sitting here at my lab top and my neck and shoulder and down the middle of my back is so painful I could cry.  I got my pj in the dryer so they will be toastie warm, then I will put my 2 form pillows in my large comfy recliner, take a lorazepam and deep breath and relax, it will cut the pain.  Tomorrow I will go for a message to relax all the muscles.

this last January, I think they are $1700.00, goes up every year.  Plus we had some big expense on the cars and a new water softner.  So I elected not to go back to chiorpractor for a few months until I put the money back into our saving.  Plus I having a room reinvaded in a massage parlor.

I have signed up to take 5 classes in "intro to swedish massage", but have not paid yet.  I have already taken 3 out of 4 classes, but I don't think it was really enough, so I would like to do the 5 classes starting the middle of next month.  Some of the classes are 3 hours and some are 4 hours, and it is a strain on my back.  However I would still like to do the 5 classes.  Then I will give just a few massages a week like maybe 3 or 4, as my back would hold out to do them everyday, and not more then 2 in a day a few hours apart.  I would start out the first massage as maybe free or $10.00, then raise it to $30.00, mainly to  pay for my supplies, like oils, lotions, clean linen and heat the room a little toastie.  The room is to the left just as you come in my front door, so they would not have to go thru my home.  My husband pretty much has the room emptied so I can have it painted, then I will put a fire place in it and move my sofa table and mirror, scotches, and rocking chair, and hang some lovely pictures, with maybe some fake patio plants, so the room will give the feeling of peace.

I really would like to help cancer patients or those who are ill but are not able to afford massages.  I think, although massage does not heal cancer, they make one feel better and have therapeutic value, spiritually as we are made up as whole, physically, spiritually and mentally.   I have practiced giving massage in class and before starting the massage, we pray over the client and center ourselves and focus only on the patient, so as not to take our own negative energy in.  I dim the room, turn on quiet healing music, I let the patient smell like say the lavender oil (whatever they like) and deep breath and tell them to find a place of peace.  That way the room is only full of positive eneregy.  If they want to talk they can, but I would try to keep them to focus on positive and healing and they are loved and God cares.

Want one of my massages?

PamSouth


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#43 Judy2

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Posted 16 February 2012 - 01:48 PM

Hi Pam South,

Do you make house calls? It is only about 800 miles from Indiana to Boston.

Judy



#44 pamsouth

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Posted 16 February 2012 - 02:21 PM

Do you live close to the ocean and when is the beautiful time of year?

I forgot to mention the candles I use are soy, no chemicals, every thing is pure and natural.

PamSouth


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#45 Judy2

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Posted 16 February 2012 - 02:41 PM

I live right by the ocean. I will be waiting for  you in July. You wouldn't want to disappoint a cancer patient, would you? That could really set  me back. I am stressed enough as it is, what with having to pay for Pam Martin's phone plan. We can't have her talking to her dogs all day. First her horn, now this. I am getting very worried about her. It's enough we have to worry about Billie mating with stingrays!!!

Judy



#46 pamsouth

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Posted 16 February 2012 - 03:12 PM

I have 2 weeks time share for the next two years, I was thinking of taking them next year which would add a another 2 week for a total of 4 weeks.  Kind of complicated how this time share lock out works.  However I never been to Boston.   I will look at see what is available in around Boston you say?   My husband starting working last year.  So I took a friend down to Florida with me for two weeks.  One on the clear beach and 1 in Orlando.  There were both two bedrooms.  It just depends on how early I book and what is available for that area and time of year.

No Absolutley would not want to disappoint a cancer patient, we are just about the only ones who really get this, you  know doctors are doctors but they don't really get it, sort of like and A/A group.

Usually in July Florida weather is over 100 degree.


PamSouth


#47 Guest_billronm_*

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Posted 16 February 2012 - 10:32 PM

Hi Judy,

   I know if I see one of them or their babies I,ll walk on water,  Now we have sharks hanging around with their young ones. I was walking in the water and I stepped on something squishy. Man I high tailed it out of there!

there are 2 low tides every day and Ron goes shelling in the dark, he keeps bugging me to go. No way will I walk on a beach in the dark. Occasionally an alligator shows up. What the hell am I doing here? The days are getting longer and longer, but Ron is having such a good time with his family he hasn't been like this since before my dx.So I;m hanging in there, we're leaving the 26th,hopefully we won't run into a blizzard. I'm sitting here drinking a margarita and eating red licorice I gotta get home.      Take Care I'll try not to be shark bait     Billie

How are you doing with you're meds? Will your system adjust to both kinds? I sure hope so. You got a double whammy.



#48 Judy2

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Posted 16 February 2012 - 10:54 PM

Hi Billie Billie Billie,

You are eating TWIZZLERS?  I love Twizzlers!!! I am soooooo jealous. Billie, I think we are on the same wavelength. I just sent you a private message, went back to the board and found this message from you, you had just posted it. Stay away from squishy water creatures, stingrays, red ants and sisters-in-law. We want you to make it  home safe and sound.

I see my onc. tomorrow. The doctors who treats my Wegener's was going to discuss with him about my meds so I will find out what was said. Hopefully I will have a better idea if I can stay on my Wegener's treatment. A percentage of people do well without treatment, it remains to be seen if I will be one of them. If I stay off treatment and the Wegener's starts coming back I will have to resume treatment as without treatment I think you can die within 5 months. On the bright side, I won't have to worry about my CML anymore.

I'll catch up with you later.....and watch out for the sharks!!!

Judy Judy Judy






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