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11-16-2017 04:10 PM
((Linda))) How did everything go??? How are you doing??? Getting lots of rest, I hope!!!! I am sorry it took me so long to get back here, I have been swamped but should have been back, I promise I will be back sooner to check and see if you have been here!!!!
I am good, DH goes in for a CAT scan of the brain next week to check for Hydrocephalus, as Parkinson's has now been ruled out for him. His neurologist knows he has something and he has been on a drug for that for quite some time. But now he went off and the symptoms have really not changed, so it is back to the drawing board!!
Check in when you can!!!
Hello to everyone!!!!
11-17-2017 01:27 AM - edited 11-17-2017 01:34 AM
linda please let us know how you are, when you can
the other ladies are giving us some info - i want to know what you are up to? something good i hope.
oh what next?! have they considered the chemo or any other meds/health issue as a cause for this 'brain' problem? it seems 'they' are continually adding to the list of chemo long term side effects.
a friend of ours was told by 1 dr he had parkinsons, but a diff dr said the symptoms were from a bp med he was taking for some time, and that should have been the first consideration. he said it may or may not improve after changing meds, sometimes there is damage. there are too many things to go wrong with our bodies!
hope your sister responds well to her treatments. it seems mm sneaks up on people- some folks have reasons to 'expect' developing heart or blood sugar issues, but who expects mm?
>> tigger for linda:
11-18-2017 11:56 PM
Had my third treatment yesterday with Darzalex. Glad I have the port in. I get it weekly with a steroid, then reduce the schedule if it works. Takes longer than normal to find out if it works. Takes around 6 hours from start to finish. My myeloma went from low risk to high risk with a low survival rate over a period of 3 months. I have 2 gene deletions and 2 gene additions, bad news. I am ever hopeful since I had a low survival rate back in 2004 when this started. More meds are available. Between the treatment and the steroid I have serious fatigue, but considering the alternative.....I'll take it. This trip through myeloma has been an adventure. Another side effect I'm seeing is a dropping white blood count. Have a happy Thanksgiving everyone. I, for one, have much to be grateful about.
02-13-2018 09:46 PM
Hey Mocha, I'm still above the grass. The drug I started back in Nov. is going well. I now am on 4 months of every other week. I was tired at first but now I feel like the energizer bunny. It worked fast. By my second infusion all my myeloma blood work results showed big drops. I think my bad fatigue came from the Revlimid I was on for 8 years. So on I go, thankful to be here after 14 years from the beginning. My hubby is well. We both have diabetes, but his got out of control and he is now on insulin. How are you? This winter has not been bad in southwest PA but has gone on forever. Hope anyone that checks this forum is well. Linda
02-21-2018 06:45 AM
so good to hear your update, may things continue to go 'well'. let us know.
what are you up to?
@newberry hoping you ladies are well too.
not much new here, hanging in there. lots of snow, ice, then today may go up to 70, than back to icy rain tomorrow. cuckoo nj weather as usual.
mom fell 2 months ago, so keeping preoccupied with her stuff. keeps my mind off of all the stuff i should be doing here, and gives me an almost valid excuse !
we didn't get to have anyone here for the fall/winter holidays, decided it was too bad of a flu season to risk it. last year i paid the price for having company, so....
02-24-2018 07:29 PM - edited 02-24-2018 07:39 PM
aaacccckkkk! linda !
hope you are on the mend, it's been a banner year for viral infections!
yeah, the mm can wait-
hope you beat that virus asap-
whatever you have to do to help your body fight it is your priority. everything and everybody else has to wait.
way too many 'healthy' folks having 'complications', so you need to really pamper yourself!
let us know...
03-22-2018 09:15 PM
Just checked this today after a month or so. The bronchitis is gone and I am recovering from my cataracts removed 2 weeks apart. Have to wait at least a month for new glasses. Since my glasses are unlined bifocals the only part I can see out is the bottom which was my close up correction. My Dr gave me a pair of cheapie glasses to help but they are bright purple. I wore them drive then put on my other glasses to shop. Chemo is going well. Have it every other week through April, then once a month as long as it works.
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