Topic: Just an FYI

Hi family! I will be going to Palm Springs tomorrow until Sunday night as I am invited to an Engagement party for Teddy's Granddaughter, Dani. Looking forward to seeing the family and the 22 month old Great Grandson who is a mini Teddy. Right down to the bow legs. I am blessed as they treat me like their Mom/Grandma.

On my Remicade infusions just a quick report. I have had 2 with the 3rd coming up Nov 1st. The 1st one immediately stopped the blood and infection but the big D is still happening and the side effects are just horrible. Muscle and joint pain, cluster headaches, fatigue, almost always feeling "looped" like out of it. I have an appointment Nov 8th with the GI and we are going to have a little discussion. I seem to reach a plateau with anything I use, get there quickly then just sit there.

Pretty much don't go out but I have to leave you with a funny! I go on a Senior dating site ,mostly for entertainment. So the following man checked out my profile the other day and this was his Introduction:

88 years old....name WILD David....and his picture shows him holding an Oxygen tube!!!  I feel bad for him but honestly I just laughed, I give him credit though at least he tried. One good side is that the way I feel and between his age and Oxygen I would not have to run hard or fast.
Have a great weekend.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Just an FYI

Thanks for the smile this morning Lainy.  Cute story.  smile

Enjoy your time in Palm Springs with your family.

Hope you can get that doctor set straight and he has some answers for you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Just an FYI

Hope you have a great time Lainy! Sorry to hear about the troubles with the Remicade, hope that gets sorted asap!

See you when you get home! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Just an FYI

Lol, Lainy! I've had some winners, too, but nothing that extreme!!!
Sorry you aren't getting better results from the meds. I hope they come up with something better.
Have a great time visiting Teddy's family!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Just an FYI

Lainy - I had to laugh that was a good one. Gotta give a guy credit for trying. Have a great time with Teddy's family and enjoy that baby they are such a joy.
Sorry about the Remicade. I was hoping it was going to be your Magic Elixir!

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Just an FYI

Hi Lainy, I know what you mean about going on the site "for entertainment."  I belong to POF (Plenty of Fish) for the same reason.  Loved your post, we need the "WILD Davids" of the world to make us smile.

Re: Just an FYI

Happy travels, Lainy, and may better health follow you to your family reunion. We all love you and await your return with more funny stories to keep smiles on our faces.  xox Holly

Re: Just an FYI

Thanks everyone. I have an infusion Nov 1 then the GI Nov 8th and have to make a decision then. I started a list of side effects and came up with 15 that I get daily! But as it was recently pointed out to me to go back where I was would be worse. Had a meltdown today but after, I mentally always feel better. Found out that Remicade is a form of Chemo! How about that? So forgive me if I say something weird on here at times, can't help it but I need to be here selfishly for me! Do any of you get depressed from chemo?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Just an FYI

Lainy,

I'm sorry you're having so many side effects.  As for getting depressed from chemo...I can't say I do.  I do have periods of time where I'm depressed and I cry.  One time it was a whole week - off and on - just crying out of the blue.  I just let myself feel sorry for myself and didn't try to hold back the crying.  It was like a cleansing for me and made me stronger.  As I said, I can't connect it to chemo - I think sometimes I just get overwhelmed by the whole situation and feel depressed.  It's ok to let go once in awhile.  Have your pity party, then move on.

Be gentle with yourself Lainy.  And it's not selfish to come here to help yourself.  I believe most of us are here for the same reason but if we can help someone else in the process then it works for all of us!  I do believe we help each other by telling our story and our feelings.

Peace, Love & Hugs,
Mary

Re: Just an FYI

I definitely got depressed during chemo.  Don't know if it was from the chemo or just because I was sick and having chemo.  I talked to my Internist and she put me on an anti depressant that not only helped with my mood, but helped with my appetite and insomnia.  I stayed on it all through chemo and it really helped. It's an old-school antidepressant called Remeron.

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Just an FYI

Thanks Mary and Randi. BTW when I stated I come here selfishly what I meant was when I am on this site I don't think of other things. It gives me what I need, perhaps even a feeling of being needed is what does it!
I have no problem sleeping at all a gorgeous man could walk in and I wouldn't wake up! I am eating fine so perhaps it is just a pity party. I do feel a bit better today mentally. Thank you both, as much as I wish you didn't go through this it is comforting now to know I am not the only one!
Randi how is school!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Just an FYI

We all need to remember that there is grief associated with loss when you have any sort of long term disease whether it is cancer, UC or any other long term problems. Grief centers around the loss of something and for people who have one of these long term disease, it is grief at a loss of a way of life. I always go back to Kubler-Ross and the five stages of grief - denial, anger, bargaining, depression and acceptance. We often think that grief only comes when there is a loss of life but there are all kinds of loss that make us go through a grieving process. Grief can be healthy and helpful until it no longer is......it's hard to say when that is for anyone but I usually say intervention such as meds or counseling when it begins to drive your life totally - not getting out of bed, not sleeping at all, eating too much or not enough, avoiding friends and family, lack of motivation, increased anxiety, panic attacks and many more.
There are tons of antidepressants out there. Remeron is one that works great because the side effects are increased appetite and sleep. I see that one a lot. I am on Effexor in the AM for the depression (bonus is decreased appetite to it counters my stress eating) then I take Trazadone at night for sleep. Good combo for me. I see my PCP regularly and I have a counselor I see weekly too.
Things like Meditation and BioFeedback also work well for a lot of people along with Aromatherapy and massage for those who prefer to stay away from meds.
Every one has there own route that works best.

We all need to hang in there. smile

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Just an FYI

I thought you were going to sleep! This feels like a date night!!!!  Good advice.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Just an FYI

I should be in bed....4am wake up to be in Seattle by 8am for 6 hours of chemo. Ugh! Now I am getting off here....this has been a fun date night for me.

Talk to you tomorrow I am sure.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Just an FYI

Good luck tomorrow and tell Mark we are all rooting for him!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.