severe fatigue

Pam P · 01-28-2011, 04:08 AM

My weakness and fatigue has gotten worse these last two weeks. I'm practically in bed all the time and sleeping much of that time.

My dermatomyositis (caused by the cancer) has flared up again - itching, rash, weakness). I've done 6 of 18 radiation txs on my femur. Still on tykerb. My hemoglobin was good for me so the fatigue isn't from that. I saw my doctor yesterday.

My onc. thought my fatigue was probably a combination of radiation, cancer (which he thinks is not being controlled by the tykerb but doesn't want to start a new chemo for 3 weeks until I've finished radiation,) and the dermatomyositis. He increased my prednisone from 7.5 to 20 mg for the dermatomyositis. Hopefully that will help.

Meanwhile I'm literally not able to drag myself out of bed except to go to the rads txs.

Just checking in between naps!
Pam

Jackie07 · 01-28-2011, 04:25 AM

Good to hear from you, Pam.

Radiation can cause fatigue. It's strange how a 'local' treatment can make a person so tired. But I remember the time when I had the standard 33 rounds after lumpectomy and chemo. I was 'so tired'...

And the tired feeling is going to linger for another month or so after you finish the radiation.

It's wonderful that your hemoglobin is good.

So march on! we are cheering by your side.

ElaineM · 01-28-2011, 07:03 AM

You are dealing with cancer and another health problem, both of which are causing symptoms. Then you had surgery which takes awhile to recover from. After that you jumped into radiation which usually makes people tired, especially if it involves daily treatment. If you live in a cooler climate you might also have a little bit of winter blues while waiting for spring.
I would say being tired is the new temporary norm for you, at least until after you finish radiation and have a chance to rest up a bit more.
I hope you and your doctor can come up with a good game plan for after radiation to knock the remaining cancer cells out of your body.
Can you apply for one of the active T DM1 trials? If you or someone who can help you go to
www.clinicaltrials.gov and do a search for T DM1 you can find a list of all the different trials available with locations and eligibility criteria. You can also search for other trials for her2 positive breast cancer on the same site.
In any case I have my fingers crossed for you Pam. Take good care of yourself and don't feel guilty about the naps. Now is the time to do whatever it takes to get well and if naps are part of that it is okay. Check in with us whenever you feel up to sitting at the computer for a few minutes. You are always welcome here.

Lori R · 01-28-2011, 07:20 AM

Dear Pam,
You seem to expect so much from yourself!! Think of all you have been through these past few months, both physically AND emotionally. Remember...you are still in treatment.

So, please continue to stay in bed, rest and regain your strength. Hoping that you have a pile of mindless magazines to browse through!! I am glad that your hemoglobin is bouncing back, which should position you for your continued battle.

Thinking of you and passing along a little extra energy this morning.

Sheila · 01-28-2011, 08:03 AM

Pam...after allyou have been through lately, fatigue is expected....the radiation alone is very exhausting on the body, plus the fact you are recovering from surgery, and on TYKERB, and fighting cancer ...makes me tired just typing all of it...needless to say your weather in MN isnt helping any either...if you are spending alot of time in bed, do they have you wearing TED hose??? You dont want the added stress of a DVT in the leg to hinder your recovery....maybe ask the Dr. if TED hose might be a good benefit especially while you overcome the fatigue....sending you all my extra energy today (sorry, my reserves are low too!) and know that we are hear for you in thoughts and prayers....better days ahead Pam!

Mary L · 01-28-2011, 08:56 AM

Pam, I was happy to see a message from you. Of course you are tired, as Sheila said, look at all you have been through. Radiation made me so tired. I was more tired from radiation than chemo. Stay in bed and let your body rest and heal. Do you have a good book to read? You are in my prayers and I am sending you my best wishes. Mary L

PinkGirl · 01-28-2011, 10:41 AM

Geez Pam ... I'm not sure what to say. Sounds like we're all
telling you that you SHOULD be tired after everything you've been
through and you're telling us that you think you SHOULDN'T be so
tired???? Do you think you're more tired than you should be?

It's so easy for us to think that there's something else wrong
when we have side affects from all the crap we go through. I'm
glad your hemoglobin is good (by your standards.) Is there one of
your doctors that you feel most comfortable with ... that you could
talk to about this fatigue??? It's so hard to not worry about everything.

Chelee · 01-28-2011, 03:46 PM

Pam,
There is not much I can say that the others haven't already said. Shelia said it all...she is so right. Unfortunetly under the circumstances I think that extreme fatigue would be normal. My heart really goes out to you Pam. Your body is dealing with so much...the physical, mental and emotional toll of all this...it's no wonder you would be so severly fatiqued. Wish these doctors had a pill to give us a charge of energy at times like this! Sending healing thoughts and prayers your way. Hoping for better days ahead real soon.

Chelee

Pam P · 01-28-2011, 04:57 PM

The nurse called today, My tumor marker up over 1300 more points to 5500. And 2 liver enzymes are pretty high too.

tricia keegan · 01-28-2011, 05:02 PM

Pam,

Sending good wishes to you, rest as much as you need to and i hope your onc can help explain the raised markers. xx

chrisy · 01-28-2011, 05:30 PM

Pam,
all true, every post above. way too much going on, each of which seems to be slamming you a little bit more. Being in MN is actually an excellent excuse to bundle up and hibernate if that is what you need to do. Wrap yourself in a nice warm comforter...and we will wrap you in warm loving prayers.

Much love,
Chris

krisvell · 01-28-2011, 05:43 PM

Pam,
Jeez! I wish you didn't have more stuff thrown at you. I bet the radiation is a big reason for your fatigue. I remember dragging for two months after radiation. I had no energy.
I hope they come up with a good combination or you can get into the TDM1Trial to get those levels down to normal.
Sending you prayers and positive thoughts.
Kris....

Catherine · 01-30-2011, 08:50 PM

Gee Pam,

So sorry that you are having to spend so much time in bed. I am hoping and praying that your strength will slowly start to reappear as time goes on. My 2cents would be: walk around the house for 2 minutes every 2 hours to keep your muscles moving and thinking. Try and eat very nurishing food. Chat on the phone to try and take your mind elsewhere. Let friends come by for not more than a 15-minute visit. Let people help you and drive you whenever possible. I wish I could come over and help. My thoughts and prayers are with you. I am of course hoping the tumor markers will come down too.

All my best,

ElaineM · 01-30-2011, 09:20 PM

I have my fingers crossed for you. Take good care of yourself Pam.

Chelee · 01-31-2011, 01:09 AM

Pam,
That's sure not the kind of news you needed to hear. You must be on over load by now. Do you have a family member that could do some calling around for you about getting into the T-DM1 trial once you're finished with your rads? (This way you could rest and have some options waiting for you when your finished with radiation.) Your onc will probably add something back to the Tykerb once you finish rads...but I'm sure he will hold off for the time being. That would be too hard on your body. I wish we could all come over and help you in some way. Sending warm thoughts and prayers your way.

Chelee

Trish · 01-31-2011, 01:31 AM

Thanks for using your limited energy to let us know how you are going. Am thinking of you,
Trish

Laurel · 01-31-2011, 07:46 PM

Pam,

I am majorly bummed to hear your markers are up and that you are feeling so crappy. Praying for energy and positive news for you, Girlfriend. You deserve a break!

Bill · 01-31-2011, 08:26 PM

Hi Pam! Sending my prayers and a big hug your way. I hope you're feeling better.

Mel3 · 01-31-2011, 08:43 PM

Thinking of you and wishing you well.

Kavy · 02-01-2011, 01:41 AM

Pam,
Sending prayers for you to feel better soon, and for your doctor to add something to the Tykerb to lower your tumor markers. Right now, you should rest, rest and rest, it will help your body to heal faster.
Hugs,
KarlaV.