This post-WBR fatigue is NO JOKE!
 

Hi Friends~

I'm nearly 4 weeks post my 15 rounds of WBR and I'm still baffled by how much time I spend in bed. It was a long process weening off the decadron, but as the decadron dose got less and less, I could feel the fatigue more prominently.
I can manage to get up and go teach & train clients, sometimes for up to 4 hours, but as soon as I get home, it's back in bed. And sleeping like I've been up all night.
I'm just still so out of sorts - my entire head is burnt & peeling, from the base of my skull to eyebrows/forehead and even behind my ears, which makes wearing a wig an extra hassle.
Then there are lots of other little annoyances, that I can't seem to wrangle. Strangely, now I'm not fixated on food - in fact, the opposite. I don't have a taste for anything, so I often find myself so hungry that I'm nauseas. Then when I do settle on something to eat, it just doesn't taste right & don't eat much.
My skin all over my body is so dry that I've scratched so much it looks like heat rash. And then the area above my right clavicle, the area where the surpaclav node that melted away with the Cytoxan, is very full and puffy. Could this be the result of the decadron, or can lymphadema affect that high up to the collarbone?
I'm still on daily Methotrexate and Cytoxan, just finished 7 days of Cipro for a UTI.
I have my 1st Brain MRI follow up since finishing WBR on Wednesday and am hoping and praying that we have good results.
Then the following Tuesday I have the annual procedure to replace the ureteral stents.
So lots of stuff on my plate again. Hoping for good outcomes so that I can coast for a little. My arms are getting tired from all the swinging I've been doing these past couple of months!

Keeping the Faith!

Jml
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.
1/18/2012- 8 new spots in 8 weeks since last Brain MRI
one 2cm spot in brain stem, one 2cm spot in R temporal lobe.
No symptoms, THANK GOD!
1/25/12 – Start WBR x 15 rounds
2/10/12 – Oral Cytoxan WORKING! Melted supraclav node & undetectable by US!
2/14/12 – FINISH 15 rounds WBR;)

Re: This post-WBR fatigue is NO JOKE!
 

Jessica,

You super woman!

Thank you for sharing your WBR experience. I'd think that all these are good signs. It means that the radiation has a big effect on your brain cells. Those cancer cells are dying fast!

I think it's wonderful that you are staying busy. The more we use our brain, the more 'synapses' are made and better brain power we have. Do remember to rest well and often...

Will continue to pray for your speedy and smooth recovery.

Re: This post-WBR fatigue is NO JOKE!
 

Jessica
You leave me speechless! Your struggle has been soooooooooooooo hard and soooooooooooooooo long but yet you hang in there strong and continue to post to support others.
I am full of admiration for you.
Hugs
Ellie

Re: This post-WBR fatigue is NO JOKE!
 

You are truly amazing. What strong women I've met on this journey. Your faith inspires me and gives me strength. One thing for sure BC is not for wimps. I'll keep prayers going up for you and you keep on keeping on. Thanks for sharing.

Re: This post-WBR fatigue is NO JOKE!
 

I don't know if it will help but I went through an unusual fatigue after one of my surgeries. I was painfully exhausted. By chance I tried taking a selenium supplement and it feel like within hours the fog started lifting.

I hope that you feel an improvement soon and that you have good news on your next brain scan.

Re: This post-WBR fatigue is NO JOKE!
 

Jessica - You certainly are an AMAZING warrior woman!
I am praying that you will have good scans results, you certainly could use a break.

I am shaking my head in awe of you - your fighting spirit shines through your words.

all the best
caya

Re: This post-WBR fatigue is NO JOKE!
 

Jessica, hoping these all bad symptoms go away soon. Have faithnthat everything is going to be fine. Sending you a hug.

Re: This post-WBR fatigue is NO JOKE!
 

I am praying very hard that you get great scan results! I am in total awe of you! Your strength, hope and fight are endless. Gods blessings to you.

Re: This post-WBR fatigue is NO JOKE!
 

Jessica, glad to hear from you. You are an amazing person. Hope to fatique will lessen soon.

Amelia

Re: This post-WBR fatigue is NO JOKE!
 

It sounds like you are passing on a valueable lesson about staying strong to those you teach.
If you run out of moisterizers suggested by your docs you might want to give aloe vera a try. Putting the fresh jell or jell from the health food store in the refrigerator or freezer before using it is very soothing.
You are doing a great job. Hang in there and keep going.

Re: This post-WBR fatigue is NO JOKE!
 

Hoping and wihing you all the best .Your post has given Hema and me some strength jml.Her fatigue is getting better and she climbed the stairs today. The hair fall is there.

Re: This post-WBR fatigue is NO JOKE!
 

After just one targeted brain rad treatment last week I have been fatigued for portions of the day, so its no wonder you feel the way you do! I'm praying along with everyone else that excellent results are seen on your MRI! I have such admiration for how you choose to battle and live every day. I garner strength when I see how abundant your strength is!

Re: This post-WBR fatigue is NO JOKE!
 

Hi jml, Post WBR are you facing memory loss.Hema is facing it and the Onc said it was a part of the side effects for WBR