Help please

[valleygirl]

Hello friends, I need your help. I'm still having horrible pain, it feels like someone beat me all over with a baseball bat.
It's not so bad when I'm moving. When I sit longer then a half hour I have a very hard time getting back up. At night is the worst, I have pain every where even my hands. My feet, knees, arms and my shoulders ache so bad it keeps me up at night. My doctor's not sure why. I'm getting herceptin every three weeks and just had my 5th and it seems to get worse. I know I read on here some time ago about how the herceptin is mixed with alcohol to save the extra that wasn't used for the next person. I now go to a much smaller hospital and think that's what's happening but I can't find it on here. I know the poster took the info that was posted on here to their doctor and I'm looking for that post to take to my doctor. He keeps giving me different types of pain medication and it just doesn't help. I asked if the herceptin was mixed with any preservatives and he kind of blew me off. He told me that he never had everyone with my type of problem. I come to this board daily and find so much comfort in knowing I'm not alone.

[valleygirl]

or what medications that have helped you with the pain. Thanks

[Becky]

Here are a couple of threads I found for you. The first 2 are the most relevent.



http://her2support.org/vbulletin/sho...benzyl+alcohol

http://her2support.org/vbulletin/sho...benzyl+alcohol



http://her2support.org/vbulletin/sho...lcohol+Lani%22

http://her2support.org/vbulletin/sho...uted+herceptin

[sarah]

Hi Valley Girl,
Sorry to hear about the pain issue. Are you taking anything else? How long have you been on Herceptin?
I was on Herceptin for 6 years but I never had the side effect (pain) that you mention. I had some skin problems. They sometimes add an anti-allergy substance to the infusion. I asked them not to do that because it made me too drowsy and I had to drive 40 minutes on a highway after the infusion so not a good idea.
I'll be interested to hear what others say.
take care and I hope they find a solution, pain is not good.
hugs and love
sarah

[yanyan]

Hi Valley girl ! Don't mean to stress you out but maybe your doctor should order a MRI or scan if the pain is consistent. Hope everything is all right !

[KsGal]

I think that was me. I was having the all over pain. I do get mine mixed now with sterile water instead of the mixture with the preservative, and honestly the pains did stop. My ankles, my knees, my legs, everything just ached all the time. I had to talk to the nurse on the chemo team that mixed mine, talking to the doctor himself didn't seem to help me for whatever reason. My doctor thought it came premixed, but it doesn't. Talk to your infusion team. It can't hurt to try it, and it honestly did help me. Some of us must just be ontolerant to the preservative they use.

[chrisy]

Good to know, glad it seems to have improved things for you!

[valleygirl]

Thanks!!! I plan to make copies and take to my doctor. Every time I told him about the pain he gave me a different type of pain medicine and told me that no one else that he's had on herceptin have complained of this type of pain. Hope after I show me this I'll get a different reaction.

[Lani]

Were you premenopausal at diagnosis? Are you postmeopausal and now on antihormonals?

Chemo places most premenopausal women into sudden premature menopause
and the SUDDEN extreme loss of estrogen can cause arthralgias (joint pains)

Antihormonals, particularly AIs, seem cause have similar complaints in some.

I had posted several times about the benzyl alcohol--I don't think it is published but removing it has improved symptoms in quite a few I hear.

The AI complaints have been accompanied by MRI changes in tendon sheaths etc (use the search function to find my post on that).

The disbelief/irritation you seem to feel are emanating from your oncologist may just result from his feeling unable to figure out what it is and how to help you. There is a lot published on arthralgias from AIs, not much of which find a great deal of relief with antiinflammatories, glycosamine glucans and other "drugs" tried.

Try to get used to using ENTREZ PUB MED (google it) putting in arthralgias breast cancer and follow the latest discoveries.

Hope this helps!

[Emy]

Also try ginger tea...it helps with any inflamation

[KsGal]

Valley, I think it really could help. I wouldn't have known if I, myself, had not read it on this site. It honestly is, I would say, at least 80% better. I was so sore I was barely getting around. When I first told my onc what I wanted, he was pretty condescending when I mentioned I belonged to a forum and had gotten my information from there, but the chemo nurse seemed to know exactly what I was talking about. For insurance billing reasons, she said she would try it one time mixed with the sterile water rather than the vial of preservative, and I would have to report back to her on the difference it made. The first time was some better, so I just stuck with it, and honestly after a few treatments without the preservative it just went away. I hope it does the same for you, and Im thinking it will because our cases sound so similar. Here's to feeling better! Let us know how it goes.

[valleygirl]

KsGal, how did it work with your insurance? If they use the alcohol as a preservative to keep any unused Herceptin, how will I be charged?
I’m assuming that I don’t use a full bottle. Will I be charged for the whole bottle since I don’t want them to use the preservative and will
my insurance pay for the unused portion? I thought of finding someone else who’s getting the same and maybe share a bottle but thinking that wouldn’t work trying to find someone that just needed what was left and it being a very small hospital. Thanks for any input J

[Lauriesh]

I am able to get it mixed without the preservative as long as there is another person getting herceptin that day. I have been having it mixed this way for almost a year, and there was only one time she couldn't mix it without.


It is definitely worth it. My joint pain is nonexistent now.



Laurie

[valleygirl]

Got it with out the alcohol yesterday!!!! I'll check in in a couple of weeks and let you know if it works.

[Jackie07]

Margaret,

Look up (use the 'Search' button) 'neuropathy' and see if that's what you are experiencing. Try to walk 30 minutes everyday - it can fix a lot of things.

[StephN]

Margaret - Welcome. Just wanted to mention you may wish to change your screen name to something other than an email address. We are not a totally secure site, and would not want you to get unnecessary spam from the people who troll the web for email addys.

[jml]

Hi~
After my 1st year of treatment of weekly Herceptin + chemo, I reached NED and we were able to drop chemo and go to Vitamin H solo.
I also switched to q3week Herceptin. As I recall, that q3week dose created so much global arthalgia-especially in my neck & cervical spine, making moving around uncomfortable and teaching (Pilates) almost impossible. I switched back to weekly treatment and that solved the problem.
If your current solution doesn't work, maybe this change in schedule will help? I know it's a bummer to have to go to weekly treatment, but if it makes life more liveable, then it's worth it.
Now, many many years down the road, I am able to tolerate q3week Herceptin.
Best of luck~

Keep 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
6/12/12- Continuing on oral Methotrexate BID & Cytoxan qpm, but on chemo break
for 3rd week due to low counts.
6/15/12 – Yay! Resume chemoJ
6/25/12 – Chemo break again due to low counts L
6/28/12 – PET Scan & Brain MRI this week…
NED IS BACK!!! NED in the HEAD, NED in the BODY!
10/26/12 – Still NED in the HEAD, but single troublesome node in chest, precariously close
to superior vena cava/heart. Not a perfect scan, but pretty darn good.
Maintain current treatment and Echocardiogram on 11/1 to keep an eye on node.11/1/12 –echo shows normal cardiac function J & node non-threating,
but experiencing symptoms of Superior Vena Cava Syndrome (obstruction/compression)
12/3 - hold cytoxan & methotrexate bc counts too low.
12/13-moved up PET scan due to increased SVC symptoms
12/14 –No more NEDL node progression causing increased SVC symptoms
12/17 – repeat echo & new chest mri for closer look…
Radiation to chest node recommended, change of systemic treatment pending
12/20/12 – 1/10/13 -14 rounds of rads to chest for mass causingSVCS
1/17/2013 – Started Pertuzumab, Herceptin, Taxotere
1/26-1/30 – Surprise hospital stay for severe dehydration, dangerously low counts & blood born staph.