Need Advice

kareneg · 04-12-2008, 07:55 AM

I have been layed up now for two months or so. I have no energy very weak can barely get dressed with out running out of breath. The doctor says my bloodwork is good but my electrolites have been up and down. So I am drinking gatorade and taking vitamins know. What else can I do to get me strenght back these treatments have been so hard on me it is taking me forever to bounce back if I do at all. Rick and I went food shopping this morning and I barely made it through it. Will it get better as soon as the cancer shrinks enough. I know I have to be more active but it is so hared I am completly wiped out. That's why I find it so hard to believe that my CBC is good all the time. Any advice I will deeply appreciate. I just want to feel better. I have no results yet on how the treatment is working. I feel like it is working, I should be having scans soon April 29th will be my thrid Carboplatin. Thanks in advance.

Love you all
Karen

Mary Jo · 04-12-2008, 08:12 AM

Hi Karen,

I know you are looking for advice on how to feel better and stronger. I'm sorry I can't help you with that, because other than what you are doing, I don't know what else you could do.

But, I can offer you encouragement because YES, I do believe it will get better EVENTUALLY. I know EVENTUALLY sounds like a long time away, but it will get here. Just hang on to that.

Also I can offer you my prayers this morning dear Karen, and that I have already done. I also pray that God would lift your spirit this day and let you feel joy and peace.

The journey is hard often times....there is no doubt. We can only trust that the One leading us knows the struggles we face and rest in the fact that He loves us and will be with us every step of the way.

Wrapping you in prayer this very moment Karen - may His Peace and my love be felt by you.

Love,

Mary Jo

pattyz · 04-12-2008, 08:33 AM

Karen,

Since you have been 'at this' so long I feel ok with my own suggestion:

Ask onc (as I did): "What is your experience prescribing Ritalin for cancer fatigue?" His answer was, with wide open eyes: "OH! Good idea!" And he promptly wrote my scrip.

For the past near six yrs since mets dx., my goal has been to try and maintain a decent QOL. Onc has been right there for me in this. Last spring, on into summer and fall, I found I did not do the prior puttering in yard. Was less and less interested in doing anything, let alone have the 'oomph' to accomplish. Needed to rest after showering......

The Ritalin has made me feel so well in comparison.
If this is something you'd be interested in, I would gladly go on to share my little bit of experience with it. Began in late December.

Warm wishes to you,
pattyz

Becca · 04-12-2008, 12:43 PM

Karen, I have been thinking much about you lately, wondering how you are doing. I was on T/X for almost 11 months and I thought it was hard on me. Now have had 6 treatments of abraxane in the last 2 months and I feel like you--very wiped out--really quite weak. For days after a treatment I have flu like symptoms with body aches, some fever, intestinal problems, etc. My bloodcounts are also doing well as yours are. I have no energy to have company in or go places. Yesterday and today I have forced myself to be up on my feet more because I feel I am losing strength.

Karen, I was hoping you were doing better with your chemo. Do you still have to go to the hospital for the carboplatin? When I read about others on this site who are on abraxane, it sounds like it is not all that hard on them. Perhaps the Ritalin that PattyZ suggests might help us.

I have no advice, but want you to know I know how you are feeling, am also thinking and praying for you. Becca

doh2pa · 04-12-2008, 01:24 PM

Hi Karen,

I'm so sorry you are feeling so terrible. I am on a similar combo (just started on Wed) Abraxane, Herceptin, Carbo and Tykerb. I've done Carbo, taxol before and remember it being rough. I do, however, remember it getting a little better as time went on. I think a lot of it is a mental thing - when you feel bad it's hard to get off the couch and then you berate yourself for not getting off the couch. It's a vicious cycle. I loved Patty Z. suggestion of getting some medicinal help. I've never been one to go the antidepressant route but, hey, we've got the perfect set up for it. This disease is very hard, both physically and emotionally, so seek help wherever you can. There are some days I just make myself walk around the house outside for 2 or 3 times (The neighbors must be saying, "what the hell is that crazy bald lady doing?). How about a yoga class once a week - signing up for a relaxing yoga class once a week with a friend might force you to get out and I always feel so good about myself afterwards.

Karen, you can do this. Many of us have on this site and we know you can do too. We are here for you.

Jackie07 · 04-12-2008, 02:01 PM

Hi Karen,

From your breast cancer treatment history, I realized that you really should be the one to give us advices on this journey. You've been through so much so successfully, I appreciate your sharing with us your feelings.

As a 4-year breast cancer survivor who's struggling with recurrence, I am young in this journey compared to you and many others. But my 'cancer' experience dates back to 1990 when I had my first brain tumor surgery, so I thought perhaps I could share with you some of my thoughts.

About 6 years before I found out about my brain tumor, I met Fr. Robert Ronald, a Jesuit priest who spent his life time in Taiwan as a Rehabilitation Consultant - a novice job title in the Island country 40 years ago when he first started. He acquired his master's degree after he was paralyzed by the polio he caught in Taiwan during the epidemic in the early 60s. He became one of the pioneers of Occupational Therapy in Taiwan.

From one of his books - a collection of his speeches on disability, he mentioned several tips in coping with difficult situation. One of them is to accept help - get as much help as we can (and say 'Thank you') - and recognize and accept our limitations. Another one is to have a sense of humor and be an advocate for yourself. One of the advice that gave me the most impact was "if you cannot move or do anything else, then find something interesting to think about." It so happened that in 1990, I did experience "cannot move or do..." after my brain surgery and going through physical therapy, occupational therapy, and speech therapy.

That's when I 'confirmed' my faith in God. Becuase I could see the road he had paved for me. Things he had prepared for me so I could handle the situation. And the cancer-ridden life allow me to give my testimony - it really is going to be one of the greatest accomplishment in my life and perhaps yours: fighting cancer.

Jackie07 · 04-12-2008, 02:23 PM

Also, about 'short of breath'. Have you had routine MUGA scans to check your heart function? Talk to your doctor and find out if there's anything else that might be the cause of your fatigue. Hope you feel better soon.

Mary Anne in TX · 04-13-2008, 06:09 AM

Hey Karen,
I hate that you feel so rotten. But I am believing that those darn bc cells are feeling worse!
I've had to adjust my thyroid and blood pressure meds to get any energy throughout this journey. And because you have taken so much, you may need to get them to look at your whole blood work and figure out some magic for you to feel better. Keep asking til you get some relief!
I still feel like the slug most days. I was a week late getting herceptin last time (battle with the insurance) and I felt like a "go-getter" the 3 or 4 days before I got my infusion. It's so tempting to go for the "feel good" rather than the "get good" routine, but we're on a mission to lick this stuff and be "long livers"; so I just keep on keeping on.
I'm praying for ya and hoping you will press a bit for more help in getting something to help out. Lots of love, ma

Sheila · 04-13-2008, 06:29 AM

Karen....
Oh I wish you would get a break and feel better...I guess I didn't know what feeling better until I got my Taxol break...or steroid break....I too was getting short of breath, but my echo was fine and my counts have always been fine....are your feet oor ankles swollen...could it be excess fluid? If so, a diuretic could help/ I know I walk every day no matter how bad I feel...it takes my mine off everything for a time...you are in my thoughts and prayers that you will feel like your old self soon....