Can anyone help Carol Please??

[tricia keegan]

Hello all,

I met Carol H from Dundee Scotland here over a year ago when Chrissy sent me a pm to say this lady was looking for help to move to Ireland in the hope of getting Tykerb which was not available to her in Scotland. Happily I was able to help a little and Carol is now living here with her hubby and two young children, she's had a rough year as her bone mets spread to brain and surgery could only remove some of it.
She then had WBR and has been struggling and fighting this disease all year.
I received this e mail from her last night, and am pasting it here with her permission as she desperatly needs help.
For anyone who does'nt remember Carol she posted her story on profile's in courage entitled "Wishing to live to age 40" .......
Carol does'nt have access to the internet right now so on her behalf I'm echoing her plea and asking for help or advice and would like to also thank you in advance.I think Carol can explain her situation better than I in her mail below.


Can't sleep and thought I would drop you a line in the hope you can maybr hrlp = got a phone call today from my breast care liaison nurse who confirmed the brain scan results from last week.
The Tumour has started growing again - which I rxpected as my symptoms are getting worse - dizziness, falling over, cannot hear very well out my left ear and generally feeling weird - the bone pain is just as bad but didn't get the ribs or spine treated whilst I was in Stv Lukes as I was there purely to treat my left leg - its still quite sore all the time even with taking morphine tabs every 4 hrs and slow release tabs as well but maybe it takes a few weeks to kick but I am seeing the consultant at St lukes soon so he can discuss it with me - he has offered to give me more Radiotherapy in the brain to try and shrink and delay the tumour growing for a couple of months - I don't know whats going to happen next really in no mans land at the moment.
I was told I am not eligible for the trial on Tykerb as my mets are unmeasurable in the bones and brain - apparently I don't meet all the criteria - but Prof Crown said not to panic = from Jan 08 Tykerb is to be Licenced and available and he will wangle it that I receive Tykerb along with Capecitabine chemo tablets and start asap in January but am scared being left over Xmas and maybe need Radiotherapy in brain asap just to slow down the brain mets over Xmas period as feeling left untreated for more than 4 wks will mean by the time I start on new treatments it will be too late and the cancer will be way too advanced and untreatable.
Got so much to think about and have tried to re register with HER2 website and asked them email me with new mem password etc bu received nothing yet - can you do me a note on the message/main board asking for any tips advice anything at all about brain mets returning and will I start to deteriorate really quickly - will I still be alive in a couple pf months = am I just worrying too much - sorry = this insomnia is worsened with increasing my steroids to control the brain mets symptoms.
Welll I will call you during this week for a chat - are you in during the day or at work would evenings be better to call.
Thanks again for listening to my rants and raves.

[StephN]

Dear Tricia -
I was wondering about Carol as we had not heard from her since shortly after her move to Ireland. Sorry to learn that she is still having problems with progression.

Wonder WHAT kind of radiation therapy they have in mind. If they will target the fastest growing with something like Gamma or Cyber knife, that could be a good plan.

If you check Pattyz's posts you will see that Temador and Xeloda have helped her. Since Tykerb will be available, can Carole start the Xeloda portion early - like NOW??

A woman I know started first with Xeloda and then added the Tykerb. I think her bone mets were successfully radiated.

All my best wishes and bright blessings for Carol as she faces these next decisions. May her oncs listen to her fears and respond.

[sarah]

Shouldn't she be on Herceptin and prehaps something else in the meantime? My friend with inflammatory bc had the same problem with tykerb but then last year it opened up to all people but tykerb was not the miracle she had hoped it would be. Definitely I would think Herceptin should be continued for your friend.

[pattyz]

Tricia,
I was going to suggest the same thing as Steph mentioned.

When I had my third recurrance of brain mets begin to be symptomatic, I started Xeloda/Temodar. I was dizzy 24/7 with falling over events. After just about a weeks time, I noticed a difference with much reduced dizziness.

After two full rounds, my 8-ish tumors had shrunk nearly 50%. And again the same after next two rounds.

That was 2yrs, 2mos. ago. This combo, and Xeloda alone for a time, has kept me stable w/no new brain mets. Recently I did have progression again to a few tumors, and have added Tykerb finally with the combo of Xeloda/Temodar. So far after two months, a bit of shrinkage and stable otherwise.

So..... If Carol could start the Xeloda and maybe get the Temodar, too... she could perhaps have some response while 'waiting' for the Tykerb.

And here is a small but encouraging trial that gave me hope:

SABCS ABSTRACT:
[San Antonio Breast Cancer Symposium]
[1079] Phase I study of capecitabine (C) in combination with temozolomide (T) in the treatment of patients with brain metastases from breast carcinoma.

Rivera E, Valero V, Francis D, Brewster A, Royce M, Esteva F, Murray JL, Pusztai L, Hortobagyi GN.. The University of Texas M.D. Anderson Cancer Center, Houston, TX


Background: T is an oral alkylating agent that is
currently being used for the treatment of primary
brain tumors due to its ability to cross the
blood-brain barrier. C has been approved for use in
the treatment of metastatic breast cancer patients who
have failed anthracyclines and taxanes. It is well
known that C crosses the blood-brain barrier and has
activity in the brain. Options are limited for
patients with brain metastases.

Materials and Methods: We evaluated the activity of
both drugs in combination for the treatment of brain
metastases not amenable to surgery. Patients were
allowed in the study if they had new onset brain
metastases from breast cancer, had declined radiation
therapy, and were neurologically stable. They were
also eligible if they had evidence of recurrence or
progression of brain metastases after whole brain or
stereotactic radiation therapy. C was started at 1800
mg/m2 in 2 divided doses. T was given at a starting
dose of 75 mg/m2 in one daily dose. Each drug was
given concomitantly every day for 5 days (day 1-5)
followed by 2 days of rest and restarted again for an
additional 5 days (days 8-12). Each cycle was repeated
every 21 days. We have enrolled a total of 16 pts — 6
pts at dose level 0 (C/T — 1800/75), 6 pts at dose
level 1 (C/T — 1800/100), and 4 pts at dose level 2
(C/T — 2000/100).

Results: Five pts had recurrent brain metastases and
had been previously treated with radiation therapy.
The median age is 51 yrs (range, 32-77). All pts had a
Zubrod performance status < 1. Ten pts were ER and/or
PR positive. No grade 4 toxicities have been reported.
Grade 3 toxicity includes headaches (2 pts), vomiting
(1 pt), constipation (2 pts), fatigue (2 pts),
nonneutropenic fever (1 pt). We have observed 1 CR, 1
PR, 6 MR, and 3 SD. Four pts did not respond to
treatment. One pt was not evaluable for response.
Median duration of response in brain was 10.5 weeks
(range, 6-48+ wks). Two pts with SD and 2 pts with MR
had previously received whole brain radiation therapy.
Three pts were taken off the study because of
progression of disease outside the brain including the
pt who had a CR in brain but progressed systemically.
Four pts are actively being treated in the study.
Conclusions: The combination of C and T seems to be
active and well tolerated for the treatment of brain
metastases from breast carcinoma. Further studies
should include the evaluation of this combination with
radiation and as adjuvant therapy in those pts who are
at high risk of developing brain metastases.

Wednesday, December 8, 2004 4:30 PM

Hope this helps a bit,
best wishes,
pattyz

[Lani]

since then I think several have been treated with Boswellia and posted

I will search further w the search function

http://her2support.org/vbulletin/sho...rain+mets+Lani

[Lani]

on intrathecal herceptin (at that time only 4 cases of such treatment attempted it seems)

http://her2support.org/vbulletin/sea...earchid=179956

[Lani]

7

http://her2support.org/vbulletin/sea...earchid=179961http://her2support.org/vbulletin/sea...earchid=179961

[tricia keegan]

Thank you very much to everyone who replied so far, I'll be contacting Carol shortly and will pass on all of this very sound advice. lani thank you too for taking the time to post these links again,I'll read through them a second time and discuss with Carol asap but it does sound interesting.
Sarah, Carol had been taking herceptin for a number of years since her original dx and it had kept her bone mets stable for over three years but unfortunatly it just is'nt working for her anymore.
I need to get some further info from her on the radiation treatment they may have in mind. Steph and Patti Z thank you both too and I'm sure Carol will be encouraged when I read your replies to her. My best wishes to all, I knew Carol would get the advice she badly needed here so now sh ehas something to discuss with her onc.
I'll keep you posted, she's hoping to be back on line soon and I know will appreciate your help.

[tricia keegan]

Unfortunatly the last two links on Intrathecal herceptim won't work for me but I'll search around and see what else I can find on this, thanks for the idea!

[Believe51]

Ed failed on the Tykerb/Xeloda combo and we had a 3 month supply of both. In the state of Rhode Island (maybe other states-unsure) we are allowed by the government to give back any/all prescriptions to the Oncologist for further dispensing. We were without medical insurance at the time we needed these drugs so we did go through the drug company to get them issued for free. When we did give them back we asked the doctor to dispense them in the same state we are in and to the person without insurance who needs them the most until they can contact the drug company themselves. Luckily I could do the leg work because anyone with bc that has to do these errands are usually too ill to fight THAT fight!!

My question for you is: If we can get this drug to your girlfriend, would the doctor start her sooner that Jan 2008?? I could do the leg work to see what I can do with our Oncologist to send them to her doctor. Please let me know if this is an option or if I can help in any other way. It would surely make my day to give back to you. Let me know, e-mail me as soon as you have a moment, I would love to help if I am able. I do know that some of these drugs DO GO OUT OF OUR COUNTRY for reasons like this, usually they are expired drugs, but not in this case (cancer)>>Believe51

[tricia keegan]

Hi Believe (marie?)

What a very kind offer of you to make and to go to this trouble for Carol, they say we get out of this life what we put in and if thats true ..lady you are going straight to heaven
Thank you, but we're very fortunate insurance is not an issue for us here in Ireland and all drugs are free of charge, the tykerb and xeloda are available but as carol does'nt meet the criteria for the trial I suspect (but need to check with her) that her onc is applying for it on compaaionate grounds so they may be able to fast track it hopefully. There's no problem with xeloda so Carol can ask to be started on that asap as one of the ladies suggested while we're waiting.
I doubt they'd be allowed to use the drugs if we took them from you but will certainly mention it. It's hard to express our sincere gratitude when not face to face with someone but please know how much Carol, and I truely appreciate you even considering this and suggesting it.
My best to you and Ed and a huge hug for being so kind..
((((hugs))))

Tricia for Carol

[Believe51]

Darling make sure you tell the doctor that OUR DOCTOR & the state of Rhode Island has this program specifically for oversea countries and our Oncologist would be working directly with hers. If he is interested, I'm in for helping Carol's fight.>>Believe51

PS If not I will help with the continued prayers!! SMILE TRICIA, you too are going stright to heaven!! Love going out to you as always.

[tricia keegan]

Thanks Marie, it sounds like a great programme and I just e mailed Carol with the details, just waiting for her to get back to me..