View Full Version : what is happening to me? HELP, this is the worst
Hi everyone, I need help, what is what, I had my third treatment gemzar combo, under impression this was an easy drug, I have minimal taxol with it and a , all 3 combos different though and dose of Zometa. My legs have been collapsing under me, I fall down and I can'g get up, then when I have my morphine meds I can get around but wonky, and I can manage housework, no strength in arms and knees and still look like a drunken sailor. Tumour and mass around c3 c4, is it on the march. I take 2x2 4mg dexamethesone twice day, my neck does not seem very stiff. All of a sudden I have to lay down and sleep solid for about 3 hours, is this because my LV was around 46% or my low blood pressure problem, around 95/50 at times. Ron my other half has been brilliant, he always seems to turn up behind me doing things I needed to do, he just knows, 18 years something must have rubbed off. SO this is why I have been off air, I don't have then energy at times, not like me at all.
Love & Hugs Lyn
DeborahNC
03-27-2006, 07:06 AM
((Lyn))
How I wish I could help you! I'm so sorry for all you're going through. Please know I am holding you close in my heart and thoughts.
on edit: Everyone, Lyn took the time to reach out to me personally via PM. Even thru all her suffering she made the effort to welcome and talk with me on a one-on-one basis. That meant the world to me.
Lyn, you hang in there. You bet that those blood pressure and LV numbers are making you tired. It's like running a flashlight with weak batteries. When a relative of mine had a low ejection fraction and blood pressure, he would literally fall asleep mid-sentence and tip over on the couch. Remember that your legs require the most oxygen and nutrient replenishment because of the size of the muscles in them. They will be the first casualty of reduced blood pressure/flow, but don't despair. They will come back.
You have a lot going on right now, but I believe you will turn the corner as your body adjusts to the treatment. Remember to take your CoQ-10 between treatment cycles to help your heart recover from any stress put on it by the chemo. Obviously you don't want such a powerful antioxidant in your bloodstream while the chemo is blasting all those nasty little malignant cells by creating free radicals. The chemo regimen will make it a very unhappy place for them to live, and they will pack their bags and self destruct.
So you hang in there and let Ron carry the load while you get better. You are lucky to have somebody like him quietly holding you up from behind. Good for you Ron. Keep up the good work. Your team will prevail if you stick together. You are both in our prayers.
Tom
Lolly
03-27-2006, 11:16 AM
Dear Lyn, you have to hang in there, as Tom points out these symptoms will hopefully get better. Also, I've read that dexamethasone can cause some muscle weakness, just ask Steph...she had the same problem when she was on it. You have my permission to take it easy while you get through this rough patch, and Ron deserves a Big Hug from all of us for taking such good care of you. Be sure and tell Boris that you're having this weakness, it may be necessary to adjust your dose ;)
<3Lolly
P.S. Just read Steph's post and urgings to you to get a Brain MRI; she's right you know, you really need to do that. PLEASE.
StephN
03-27-2006, 11:59 AM
The old quip from the '60's is apt in this case! Poor YOU.
Yes, the Dex is an evil drug. First it wires you up with a false sense of energy, then you drop like a rock over a cliff when the dose is lowered or you go off it.
My blood pressure is on the low side normally, but it was even lower when on chemos. Top number would barely reach 100 and the nurses would have to take my BP a couple of times to be sure they had the right reading. It was also faint and difficult to hear. Had the weakness in the knees then too, but only took a small amount of the Decadron with my chemos. Problem was my lowered blood counts and lack of oxygen to long muscles.
WILL YOU get a BRAIN MRI, please? I can't recall when you last had one. Your symptoms could also mask something going on up there. Hope not, but we have to keep a watch.
Get all the rest you can - your body needs it, and let the others in your household pick up some slack. Have Ron crack the whip if needed.
P.S. I feel a little tired these days myself - kinda like having the opposite of Spring Fever!
TriciaK
03-27-2006, 12:42 PM
Dear Lyn, I can't add much info, but what Tom sent sounds really logical. I will tell you what my oncologist once told me when I complained that I wasn't able to do anything or get any work done: Don't worry about it. The hardest work you have ever done is what you're doing now and have been doing: fighting in hand to hand combat with this disease! Don't even think about anything else ; it will all be there when you can get to it, or hopefully someone else will pick up the slack. Your hard work is just what you are doing, fighting to get well, and that's all you need to do. This is a time to rest, sleep or read or watch TV, baby yourself and let Ron be there for you, as he is doing, bless him! Don't think of doing anything else. I like to remember that the scriptures always say "It came to pass", not "it came to stay." This too shall pass ! Remember there are a lot of people on this board praying for you! Hugs, Tricia
Cathya
03-27-2006, 12:53 PM
Yes, there truly are a lot of people on this site praying for you. We haven't been through what you are now going through but we are thinking of you and passing along positive thoughts and prayers for you. God bless.
Cathya
Barbara H.
03-27-2006, 02:16 PM
Hang in there, Lyn! I'm sure the decadron is making your legs weak. I had a hard time getting out of a chair and climbing stairs when I was on it.
Thinking of you,
Barbara H.
Unregistered
03-27-2006, 03:18 PM
Theres a song there somewhere - a sea shanty - something about drunken sailors early in the morning - I dont remember the words.
Hang in there,
RB
Lolly
03-27-2006, 04:24 PM
The Drunken Sailor
Chorus
Way hay and up she rises
Way hay and up she rises
Way hay and up she rises
Earl-eye in the morning!
What shall we do with a drunken sailor (3x)
Earl-eye in the morning!
Put him in a long-boat till he's sober (3x)
Earl-eye in the morning!
Keep him there and make 'im bale 'er...
Way hay and up she rises
Way hay and up she rises
Way hay and up she rises
Earl-eye in the morning!
Trice him up in a runnin' bowline...
Tie him to the tasffrail when she's yard-arm under...
Put him in the scuppers with a hose-pipe on him...
Take 'im and shake 'im and try an' wake 'im...
Way hay and up she rises
Way hay and up she rises
Way hay and up she rises
Earl-eye in the morning !
Give 'im a dose of salt and water....
Throw 'im in the bilge and make 'im drink it...
Give 'im a taste of the bosun's rope-end....
Stick on 'is back a mustard plaster....
Soak 'im in oil till he sprouts a flipper....
Shave his belly with a rusty razor....
Put him in the guard room till he gets sober....
Way hay and up she rises
Way hay and up she rises
Way hay and up she rises
Earl-eye in the morning !
Unregistered
03-27-2006, 04:37 PM
Thank you very much for looking that up Lolly.
It is strange the way the subconscious must work.
Kind of appropriate.
It made me smile, and its still there.
Maybe an idea for an HER anthem?
RB
Lolly
03-27-2006, 04:40 PM
Not a bad idea RB, as I know we can all relate!
Sheila
03-27-2006, 05:37 PM
Lyn
I agree with Steph, get a brain MRI and rule out anything going on...take it easy...I am thinking of you and sending positive vibes and warm hugs across the miles to you....
tousled1
03-27-2006, 05:45 PM
Lyn,
I am truly sorry that you are going through what you are but remember there are a lot of people here routing for you and thank God that you have a man like Ron. I can tell you that when I get decadron I feel weak, tired and every bone and muscle in my body aches. Hang is there. My prayers are with you.
Lyn,
The term "drunken sailor" scares me. It is the same phrase Mary Crawford used when she suddely starting to have problems walking. A scan showed that one of her brain mets have moved into her spinal cord. Soon afterward she was completely paralyzed, went into a coma and passed over. She had told me that they (the docs) didn't find it soon enough.
NOW, this is NOT meant to panic you. Only to make sure you get scanned very soon in case there is a problem that can be dealt with. Let us know.
Love and light,
Lisa
Lolly
03-27-2006, 10:09 PM
Lisa, I'm sorry the little ditty brought back scary memories, it was only meant to make Lyn laugh. I'm also worried about Lyn, and this was my feeble attempt to deal with the fear. Sorry.
<3 Lolly
Unregistered
03-27-2006, 11:01 PM
Lynn,
I have no doubt that whatever it is, it will come to pass. Your the living legend. I am sending you positive thoughts, energy and parayers your way down under. Thank goodness you have a great guy like Ray to help out. I know now is not the time to think you are blessed with so many great things in your life, but you are. Stay strong. love to you,
Hi everyone and God Bless you all, your prayers and thoughts are truly wonderful. I had an MRI done on my neck the day before I went on the boat 17 February, 06 and one on the head, neck and shoulder on January 1, 06 and found the mess on my C3 C4 when I got home. It has taken since September last year to find this one and that was when I stopped the eostrogen blocker, so fingers crossed and praying it is the steroids/drugs and the low blood pressure, my blood must still be low as well, this week I don't have to be anywhere unless I make it happen, I finished a course of Penecillin but still feel flat, I suppose it had to catch up with me sometime, could it also be the Zometa? I have instructions from Ron to go to bed real soon, such a lovely shadow I have, I will keep you all informed, at least I can take my daughters lap top to bed and get on line anytime I want.
Love & Hugs Lyn
StephN
03-28-2006, 01:02 PM
Hey Lyn -
If you are also fighting an infection (pencilllan) that will take the wind out of your sails as well. Did not have that factored in to my last post to you.
You state you had an MRI of your HEAD. Does that mean the inside - as in your brain?? This is a specific test and you need it with and without contrast (Gadolinium). Three months is not long in the scheme of things. I would still ask for another one.
Maybe not this week as you are under orders to "rest." Obey, OK?
lindaw
03-28-2006, 03:27 PM
Dear Lynn
Just read your post and am hoping you are resing and letting others look after you.
love
linda
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