HonCode

Go Back   HER2 Support Group Forums > Herceptin / Tykerb
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

Reply
 
Thread Tools Display Modes
Old 05-01-2009, 07:53 PM   #1
ellzmom
Junior Member
 
Join Date: May 2009
Posts: 4
Mom's Tykerb/Xeloda Story

Hi all,
Mom's is currently Stage IV with mets to Pleura (4/2008) and here are the current episodes and questions:
Mom went to the ER for unexplained pain that's been intermittent since shortly after starting Tykerb/Xeloda about two months ago. She knows and can endure pain because of all her life's struggles but this one (current pain, that I'll call Big Pain) is different she says and only she and God really knows what it feels like.
This is mom's history leading to the third chemo round of Tykerb/Xeloda (T/X): http://community.breastcancer.org/fo...5?page=1#idx_2
The pain as she describes it is more pronounced after taking T/X. It begins in her left breast (makes it feel very heavy) and then moves to upper chest, then her back. It's more than excruciating. So is this just T/X side effects?? Or the toll of round three finally catching up to her since the first two rounds were relatively easy?? Or too high a T/X dosage??
Or is this pain related to the chemical pleurodesis of seven months ago (10/2008) that may still be healing(scar tissue)?.
Mom was also recently prescribed antibiotics (Sandoz/Azithromycin) for inflammation on the left lung as per an Xray that her Onc says is pneumonia. I wonder if this too is connected to that Big Pain??
I and my siblings are really pained by these latest developments. We continue to pray that T/X will work unlike her previous herceptin/Navelbine round.
BTW mom has a second opinion scheduled for next week.
I'll have an update on the ER visit soon.
Thanks for reading,
ellz
ellzmom is offline   Reply With Quote
Old 05-23-2009, 11:28 AM   #2
ellzmom
Junior Member
 
Join Date: May 2009
Posts: 4
Here's an update:
Mom's doing OK but with pain medication. She tried the pain patch but it turned out to be too strong and stopped after the first day due to elevated blood pressure that could have resulted in a stroke. Her PET scan should be in another month, at which point we'll know if TX is working. She's taken 1-2 CATs since the last PET and the lungs looked Ok with no clots. Her docs continue to say the pain is from the pleurodesis, a pain that comes and goes and is excruciating sans pain meds. Some days she's too fatigued to do anything much and other days she can get on the stationary bike and go for walks. Lately she's developed coughing (and loud snoring for the first time) at night for which she's taking robitussin, resulting in coughing up of much phlegm. She remains a fighter with faith!

Question: Should we insist on a bone scan, symptom being the pain in her side and back. The pain was present before she she started TX but not as debilitating. Or is the PET enough to detect bone mets, as her Onc says?

Thanks for reading,
ellz
ellzmom is offline   Reply With Quote
Old 05-23-2009, 09:03 PM   #3
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,801
Welcome Ellz,

First let me say how impressed I am with your dedication to your Mom. And I am so sorry that she has to be enduring so much pain.

Her pain could well be related to the cough and fatigue. Since she's able to get on the stationary bike and walk, I think (just personally) it's probably OK to wait for the PET scan.

The most recent guideline discourages doctors from prescribing bone scans and some other tests. The reason they give is it does not improve the outcome. I had 'forced' my doctor to give me the bone scan some time ago after I had seen it in many members' signature. They must have put out the new guideline because many oncologists had experienced the pressure of all kinds of request for scans.

I'll be praying for your Mom and hope she will at least get her pain reduced.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 05-27-2009, 08:07 AM   #4
ellzmom
Junior Member
 
Join Date: May 2009
Posts: 4
New Update:
Mom is back in hospital because the coughing at night turned out to be recurrence of left PE. It seems the initial pleurodesis was ineffective after 7 months. (The performing Doc had mentioned that there was some leakage, as in the cavity was not completely sealed). Mom is awaiting a second pleurodesis or whatever else the Doc's determine is required. Drainage of the PE will be delayed until her blood is thick enough. Blood thinners were stopped and she's taking vitamin K to thicken the blood in hopes of drainage in another day.


These thoughts come to mind:
  1. Since malignancy causes the fluid buildup, then it could mean that Tykerb/Xeloda may not be working or yet?? However, I've read that the pleurodesis can cause this extra fluid.
  2. Maybe this time around the Docs should explore using video-assisted thoracic surgery (VATS) pleurodesis? (From what I've read, VATS is considered to be a more effective procedure.)
  3. Or what about going with the alternative method, Indwelling Pleural Catheter (IPC)??
-ellz
ellzmom is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:39 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2018, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter