Worst News Ever!!!!

[Lyn]

Well gang, it looks like my days are numbered, I have spent the last week in hospital to find out today that my neck tumour has infiltrated my spinal chord and is burrowing into it and I could be a quadruplegic at any time, how do you like that for a statement, and that was how I was told, for every one else in the ward to hear as well, and they took it as badly as I did, she was like a puffed up chook when I said well, you won’t be doing any surgery and she no, then I said well I am going home, she spluttered at that and started going on about their oncologist and radiation oncologist, and I said thanks but I already have my own. Weird while I was waiting to be picked up this gentleman came and introduced himself to me as being with her when she told me and as it turns out he has apparently heard of me and had read my notes that Boris had, and he is head of the radiation oncology at that large Brisbane hospital and has offered his services to help in any way he can and he will be at my hospital on Wednesday to speak with Boris,, I have to wait for the CD of my MRI to come in the mail so I can give them a look. The surgeons rang Boris and I am seeing him on Tuesday, and this new gentleman seemed a bit surprised that I would be seeing him so soon, and that I knew the other Radiation oncologist at the large private hospital, hey I have been around a long time and Boris was only 32 when he first started treating me, so I have been teaching him, so I need to stick around, but fully in tact, but as he says I am dammed if I don’t have radiation, I know this and said I know, so hopefully, fingers crossed this area hasn’t already been done, I know I have had about 100 doses already but I know from my laser hair cut I haven’t in that area, so all we can do is hope and pray that that the radiation doesn’t severe the spine anyway, so dammed if I do and dammed if I don’t, so it is a wait and see game and as long as I can still use my arms and fingers I will post. I was well composed while she was speaking to me and that seemed to knock her off her perch, not that I am shooting the messenger, but she could have told me sooner as we have a 4 day break now for Easter so time is obviously important, so the lesson here is, don’t under any circumstances be allowed to be talked into letting cancer grow so the chemo can kill it, mine has been growing since I stopped the Eostrogen blocker in September so it has been on the march now for 7 months already, hopefully the Herceptin has been slowing it down, but tumours are growing, the one on my lower spine they weren’t to worried about. So I am off to do some research, I didn’t come this far to let the team down.



Love & Hugs Lyn

[Maryanne]

Lyn,

Please Know We Will All Be Praying For You!!!

Maryanne

[DeborahNC]

((((Lyn))))

[Cathya]

Lyn;

Can we help you research? What would you like us to do.....there is an army here at your disposal.

Cathy

[AlaskaAngel]

Lyn, I hope that you and the team you work with can grab hold of it and slow things down. It just seems so impossible that so much new information is coming out that you wouldn't find the right piece for your puzzle. I read your posts and appreciate your efforts to really communicate your situation. I wish I had a better brain and understanding of all the info out there to be able to suggest possibilities.

Sincerely,

AlaskaAngel

[TriciaK]

Lyn, Count on my prayers as well. If anyone can lick this you can. We love you and look up to your courage. Hugs, Tricia

[Lisa]

Lyn,

Perhaps this new guy is your angel. I will pray that whoever IS your angel will guide you through this.

Love and light,

Lisa

[mom22girlz]

Hugs, prayers, thoughts.....
susan

[tammymarie1971]

Lyn...You sound way too strong to let this bring you down!!!!! If you want people to research I would love to help...I love research and will gladly search things out for you!!I know it can be a very daunting process for one person.
So I guess the boxing gloves are getting laced up and ready for another match!!!!!
Tammy

[Lolly]

Well Lyn, your situation is serious, no doubt about it, but I KNOW your spirit is strong enough to handle it. Boris is not about to let you go without a fight, and it sounds like he has an ally with the gentleman you met so fortuitously.

Let us know what direction you're headed in research wise, we are standing by.

Love and Hugs,
Lolly

[Barbara H.]

Lyn,
I hate this news. I'm leaving in 2 min. to see my parents in Florida. It is Spring Break here. Boston Marathon and Patriots Day on Monday! You will be in my thoughts and I am hoping for better news. You are such a model and inspiration.
Thinking of you.
Barbara H.

[Cynthia]

Lyn,

When one of us suffers, we all do. We truly are all in this together. Please know that prayers are being said for you all over the world.

Cynthia

[MCS]

I will pary for you tonight

MCS ( maria)

[tricia keegan]

I am fairly new here but have read your posts recently with nothing but admiration for your courage and humour at such a painful and difficult time.Lyn I also will be praying for a good outcome for you and that someone will give you an extra boost of courage and humour to get you through this.God Bless you.
Tricia

[michele u]

Lyn, wasn't there talk about something new they are doing with herceptin in the spinal column? I thought i read this in a earlier post. If someone reads this that has heard about it respond

[Montana]

Lyn, I'm sorry to read your news. I'll be thinking good thoughts and sending them your way.

[Cathya]

Lyn;

Michele is right. I remember Lyn posting about this and here is what she posted:

Herceptin is now being tried intrathecally (injected into the brain via the CSF)
I posted this to the wrong forum--there is no clinical trial--yet.
Herceptin is now being tried intrathecally (injected into the brain via the CSF)
--CSF is the cerebral spinal fluid that bathes the brain and circulates around the parts of the brain and spinal cord

--carcinomatosis just means "widespread cancer"

leptomeningeal or meningeal involvement is different than parenchymal involvement as I explained in an earlier post (parenchymal means within the tissue of the brain itself rather than on its outside linings/covers)

Here is the abstract:

Oncol Rep. 2006 May;15(5):1373-7. Links

Application of intrathecal trastuzumab (Herceptintrade mark) for treatment of meningeal carcinomatosis in HER2-overexpressing metastatic breast cancer.

Stemmler HJ, Schmitt M, Harbeck N, Willems A, Bernhard H, Lassig D, Schoenberg S, Heinemann V.

Department of Internal Medicine III, University of Munich - Klinikum Grosshadern, D-81377 Munich, Germany. joachim.stemmler@med.uni-muenchen.de.

Leptomeningeal carcinomatosis represents a rare manifestation of metastatic breast cancer (MBC). A 39-year-old female presenting with HER2-overexpressing MBC and suffering from meningeal carcinomatosis was treated with the humanized antibody trastuzumab directed to HER2 by intrathecal administration. The patient was diagnosed with HER2-overexpressing stage III breast cancer in December 2003. In August 2004, the patient developed a singular intracerebral metastasis which was resected by neurosurgery followed by whole-brain radiotherapy. Since MRI and cerebrospinal fluid (CSF) analyses indicated meningeal carcinomatosis, the patient was commenced on trastuzumab (6 mg/kg q3w) and capecitabine (2.500 mg/m(2) d1-14, q3w). Prompted by clinical deterioration, 5 repeated doses of intrathecal methotrexate (15 mg/dose) were administered, yet without clinical improvement. There is initial evidence that trastuzumab does not reach an adequate concentration in CSF after intravenous application. Nevertheless, infiltration of trastuzumab into CSF is facilitated under conditions of an impaired blood-brain barrier, as it is known for meningeal carcinomatosis. For patients with leptomeningeal disease, intrathecal application of trastuzumab may provide an interesting therapeutical approach for patients with HER2 overexpressing metastatic breast cancer. Therefore, an Ommaya reservoir for intrathecal treatment with trastuzumab was placed surgically and intrathecal therapy was begun with escalating doses of trastuzumab (5-20 mg), which proved to be effective and well tolerated by the patient. Within 2 weeks after treatment, the patients' condition improved significantly and cell counts in CSF obtained from the Ommaya reservoir remained low for 11 months after first diagnosis of meningeal carcinomatosis when clinical symptoms and MRI indicated progression of meningeal and cerebral disease.

PMID: 16596213 [PubMed - in process]

[Sherryg683]

Lynn, you are in my prayers. I am so sorry to hear about your news. I think your point about letting the cancer grow to be wiped out by chemo was well made. That is why I don't believe in waiting till you have symptoms, it may be out of hand by then..sherryg683

[Lolly]

CancerGuide: Clinical Trials and Experimental Treatments


http://www.cancerguide.org/offprotocol.html



Formal Compassionate Use Programs
A formal compassionate use program is a mechanism for getting an unapproved but promising new treatment to patients who would otherwise be unable to receive it. Compassionate use programs are for people who have a life threatening with "no comparable or satisfactory alternative drug or other therapy available to treat that stage of the disease in the intended patient population" (in the words of the FDA regulations).

Formal compassionate use is a bit like a clinical trial in that you will still have to meet specific requirements such as the type and stage of disease, and usually you must be treated by doctors who participated in the clinical trials for the drug, but compared to trials, the requirements are somewhat relaxed. If you qualify for an open clinical trial of the treatment, obtaining it through compassionate use is not an option.

According to the FDA regulations, compassionate use programs are normally for drugs which are in phase III or have completed accrual to their trials (it takes significant time to allow the data to mature, compile it, and get it reviewed by FDA - often several years), but the regulations do say compassionate use might be possible for some drugs which are only in phase II testing. I presume there would still have to be applicable promising results - such as spectacular results from an ongoing phase II trial. You won't find compassionate use programs for drugs which are in the very early stages of testing. If you just heard about the latest cancer cure for mice on the nightly news, you can be sure there will not be a compassionate use program. There have to be results in people with your type of cancer.

Although the FDA has to approve compassionate use programs, they normally do so without fuss. Whether there is a compassionate use program largely depends on whether the drug company has decided to have one. The decision depends on many factors including the cost which can easily run into the millions and whether there is an adequate supply of the drug (which is often an issue). In the past, agitation by organized patients has sometimes made the difference. For instance, Genetech granted expanded access to the breast cancer drug, Herceptin, only after breast cancer activists conducted an intensive campaign. ("Demand Grows for Early Access to Promising Cancer Drugs",Journal of the National Cancer Institute, November 20, 2002)

Finding Compassionate Use Programs
If you're interested in a particular drug you can find out if there's a compassionate use program by contacting the company. The first step is to find their web site.

[Sheila]

Lyn
You have people all over the world sending warm thoughts and prayers your way that this is another hurdle you will sail over....you have had so many...and that is what makes you such an inspiration to us all....take the lead once again!