I guess it's our turn now...

[Tom]

Well, I just got the kind of news I have had nightmares about since we started this journey. Mom's PET shows areas on her opposite side chest wall, colon, and hips. When we went in for Herceptin today, the oncologist grabbed me and sat me down to tell me that she would not be getting her treatment today, as the disease had obviously progressed. I begged him to let her have one last infusion, but he refused, saying "it obviously isn't working anymore". I asked him if the cancer wouldn't go wild without it, and he just stared at me. He is suggesting that we do nothing else in the way of treatment. How the hell did we go from NED in December to this?

I am devastated. We have worked so hard to prevent today's outcome, and I almost feel it was for naught. I am having a hard time keeping from vomiting. He has ordered a CT to get a handle on what's actually there, as he can find no mass of any kind on physical examination as far as the suspect area go.

I started asking about lapatinib, but he knows of absolutely no one that is receiving it anywhere in the area. It seemed that each additional question I asked drew a blanker stare than the first. If anyone has any idea what other chemo agent might be "mild" enough for Mom (82) to stand without making her deathly ill, I am all ears. This is the first time in our whole journey that I have felt totally helpless. God Bless her heart, her dementia is far enough advanced that she is unaware of how sick she is right now.

I suspect our only hope is that somehow Tykerb will be approved for general use before our time runs out. It seems so odd that she would have mets in these areas, yet no sign of anything in the bones, liver, or brain. Her brain MRI was clean. My God this is a cruel disease. I know many must be saying, give me a break she's 82, but it doesn't hurt one bit less. If anybody has any thoughts on where to turn, please take a moment and let me know. I can't bear the thought of having my heart broken like this.
Sincerely,
Tom

[Becky]

Oh, Tom. I am so sorry this has happened. I think that Xeloda might be a good starting choice (continuing with Herceptin which will help - its just not good enough all by itself right now). Xeloda only lasts in the body about one hour. It can cause problems with hand and foot peeling but if side effects are a problem, the dose can be reduced and the drug is still effective.


Taxol can be hard on some people but very tolerable for others. Abraxane, another taxane, is supposedly easier.

I would try the Xeloda only because it is oral and will spare the veins (although I can't remember if your mother has a port or not).

My suggestion is Xeloda (or secondly Abraxane) either combined with Herceptin.

Try to have a blessed and peaceful holiday with your beloved mother.

Kindest regards

Becky

[Cathya]

Tom;

My heart truly goes out to you. Lolly posted this earlier this evening and perhaps it would be of interest to you. I will be watching your posts. God bless.

Cathy

Contact Genentech about Lapatinib?
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.

[jhandley]

Hi Tom

Sad to hear of your mum's progression....can you see another (more helpful) oncologist for a second opinion about treatment? In the meantime up the Q10 to 400 mg/day and the fish oil: Bioglan make a super fish oil that is 3 xbetter absorbed and if you read the post about the chap who successfully reduced his lung tumours to almost nothing he was taking the equivalent of 20 g of normal fish oil a day (he built up gradually) so 7 of these new ones.
Keep fighting..thinking of you.

Jackie

[RhondaH]

I am SO sorry about your news...you are such and AWESOME son. I will keep you both in my thoughts and prayers.

Rhonda

[Lolly]

Tom, this is hard news. But, I think Xeloda is a good option right now. It's easy to take, and if the starting dose is low and that's tolerated well, then dosage can be gradually increased. On the other hand, the low dose might just do the trick, as your mom has done so well on Herceptin mono all this time she's obviously a "responder".

I'm not an oncologist, but I DON'T understand why her doctor is throwing out the baby with the bathwater by dropping Herceptin at this time. Many others here, myself included, have progerssed while on Herceptin and our oncs have simply ADDED a chemo agent to give Herceptin the extra boost it sometimes needs.

I have a chemo buddy who's lung mets were wiped out with Xeloda/Herceptin. I have another chemo buddy who has Inflammatory BC, notoriously hard to treat, who did very well for a good long time on Xeloda/Herceptin.

Again, I'm not an oncologist. But it seems to me her doctor is giving up too fast. Maybe he feels because of the dememtia and her age the deck is stacked against her, but who's to say she doesn't have the right to maintain good quality of life by keeping the cancer and it's symptoms at bay for as long as possible. That isn't done by stopping treatment, unless the treatments are causing unacceptable side effects.

I hope you can regroup and get a sympathetic ear, if not with the current doc then a new one.

Keep us posted, and let us know if you are needing any research.

<3 Lolly

[Sheila]

Tom
I would find another oncologist and see if they will give her Herceptin and Xeloda...the Xeloda should be fairly easy for her and is taken in pill form....side effects seem minimal...even if they refuse the Herceptin, try to get the Xeloda....it has shown some promise on those of us who are on it or have taken it.....your Mom is 82...but she is still your Mom and you want her to be helped in any way, that is understandable....I am praying they will give her the Xeloda, keep her on the Herceptin and she will show improvement....every day you have with her, and she has with you is truly a gift to enjoy.
Keeping you both in my thoughts

[michele u]

Tom, i would get the number for Cathya's post on compassionate use of Lapatinib. They are giving it with Xeloda in trial so that would be a good choice. The dr's are not aware of all this going on with new drugs. WE as patients,and family members like you, have to PUSH for this new stuff. I don't know why they would say no to the oral med Lapatinib. Get your onc on board and push for the Lapatinib! Good Luck

[Sherryg683]

Tom, you are a wonderful, compassionate son. I hope my son grow up to be half as loving as you are of your mom. Keep looking, you might have to go to another Oncologist. I pray you find something to help you mom...sherryg683

[Lani]

where are you located? If the Xeloda is too much for your mom consider looking up the trials of metronomic chemotherapy. They use tiny amounts of oral medications (cyclophosphamide or methotrexate) given daily. It works on the weakest link, the cells lining the new blood vessel the tumor recruits, and starves the tumor of a blood supply. The dose is so low other normal cells are virtually unaffected. Rheumatoid arthritics take low dose methotrexate for years without problems.

Was her tumor estrogen receptor positive?...lt is felt that Herceptin resistance develops due to ER pathway cross talk with her2 pathway (just as vice-versa the hormonal resistance develops due to her2 pathway crosstalk).

Faslodex (a simple injection once a month with less side effects than AIs or tamoxifen) is felt best in metastatic her2+er+ breast cancer. It is usually given to those who fail tamoxifen or an AI but I know in England it is given as part of a compassionate use program.

BEFORE YOU DO ALL THAT BE AWARE--all that lights up on PET is NOT NECESSARILY cancer. Any tissue that uses more glucose (has a higher metabolism than normal) than others lights up--so it could be an infection (colon abscess especially if she could have diverticulitis), a stress fracture of her hip and maybe a new (and hopefully less malignant tumor in her other breast--if it were an abscess or rib fracture I think she would have let you know it hurt there.

If you can get a PET/CT (simultaneous PET and CT) it can localize the problem in 3 dimensions--similarly a bone scan might localize if the problem is really in the chest wall or a rib.

Does your mom have regular Medicare or is she in an HMO? Regular Medicare will pay for all the testing needed. If she is on an HMO the doctor may not want to expend money that otherwise goes to his yearly salary in order to try to find out what is going on in someone he has probably "written off"

Now is the time to take all the energy you have spent trying to supplement your mom's Herceptin with all the things you could think of and use that energy to try to get the medical establishment to do what they would want done for their own mothers.

First be sure with testing that what they see truly is mets and not diverticulitis, and stress fractures of the hip (doesn't take much in an older lady to get one) or a rib fracture (can occur with coughing at her age). My 85 year old father had two pelvic stress fractures caused just by the dog pulling too hard.

A CT of the hip and chest can determine whether there was a regular fracture through normal but osteoporotic bone or whether it was a pathologic fracture through bone weakened by metastasis.

I am not certain what would be the easiest study to rule out diverticulitis ie, you don't want to so dehydrate your mom with a preparation for the test with things which cause diarrhea that she DOES fall and fracture her hip--a choice would have to be made between a CT scan, a barium study of the intestines etc. Unfortunately a virtual colonoscopy is not yet covered by insurance.

Virtually all doctors who lecture on metastatic breast cancer keep their patients on Herceptin once it "fails" and just add something. Look at the interview of many leading oncologists in "breast cancer update" and you can see that is the concensus.

If your mom is in an HMO, you don't have to wait until January. You can change her to regular Medicare AT ANY TIME and there is NO SUCH THING AS A PREEXISTING CONDITION--she cannot be refused. It takes 30 days or so for the paperwork to go through if you keep on them.

I helped someone with a terrible lymphoma and he was able to get out of the HMO and onto regular Medicare which allows you to see any doctor abd get any treatment Medicare has deemed non-experimental and reimburseable.

[karenann]

Lani,

In regards to the, "Cross talk" with Her2+++ and er/pr+, I thought that that had to do with Tamoxifin and not Aromatase Inhibitors. What I have read, and I am not an authority on this subject, is with Her2 disease, AIs work and Tamoxifin does not. I am er/pr+ and what you said makes me worry.

Thanks,

Karen

[Lani]

I have heard it in conferences and the truth is nobody knows, so I haven't mentioned it until now, when Tom's obvious anguish got me to put things on the board I have previously held back on.

The most recent breast cancer researcher I talked to thought an aromatase inhibitor might help prevent herceptin resistance, but the paper she was working on has been submitted but not published yet so I she couldn't let me read it to see what her arguments were.

As regards the herceptin reversing the antihormonal resistance, there is some evidence in the petri dish but no evidence in people that it is so...that is why I was hoping to find out how many of the long-term survivors on Herceptin were also ER+ and treated with antihormonals. There are so many pathways and so little is understood. All your doctors can do is what is felt to be helpful by the best evidence at the time. That is aromatase inhibitors for now (fulvestrant after failure of aromatase inhibitors may become the standard in Stage IV patients) While her2+ER+ patients only constitute 8-10% of breast cancer patients it might take a while to find the best way to treat them. We all certainly hope NOT!!!!

THEY HAVE TENTATIVELY DIVIDED BREAST CANCER INTO FOUR OR FIVE MOLECULAR SUBTYPES AND NONE OF THEM ARE HER2+ AND ER+. The good news in the short run is that the HERA and US studies of adjuvant herceptin showed the benefit of herceptin was the same in ER+ and ER- her2+ patients. The story continues to unravel, so don't worry--just try to stay informed! Just be happy they have more things to aim at with treatment--those people with triple negative breast cancer have only surgery, radiation therapy and chemo. You have already two targeted treatments, and perhaps more to come.

Sorry to have alarmed you. I have Censored myself on at least 2 dozen occasions before. They REALLY DON"T KNOW, but they are acting on the best available clinical trial studies available. Every day dozens of papers are published. Let's all keep our eyes out for a better understanding of the her2+er+ tumors!

[Bev]

Everyone has great advice. Keep fighting, you do it so well. I hope things will turn out OK. BB

[Lisa]

Tom,

You're an amazing, loving son. Your mom has no idea how much you're doing for her. But we do.

My first and only thought is to FIND ANOTHER ONC...NOW. Someone else asked where you are located. I'll just bet somebody here can give you good leads.

Tom, during this incredibly tough time, please don't forget to take care of yourself.

Love and light,

Lisa

[karenann]

Lani,

I always appreciate the information you post, so please don't stop. I agree with you, that knowledge is power and the more informed we are, the better decisions we can make regarding our healthcare. So, once again, thank you for the information you share with us.

Karen

[Lyn]

Hi Tom, I know how devestated you are feeling, I would get another oncologist, this one is working against you and not with you. I had an X-Ray on my knee tibia today, I fell nearly 3 weeks ago and my leg was now aching through the morphine and rest of my pain relief, I was convinced I had fractured it with the radiating pain seeming to get worse, last time I just fell up against the wall and broke my collar bone, but no fracture or anything else this time I have to take more pain relief, same here gone from just problems with lymph glands to cerebal fluid in the spinal chord forming tumours and this came about by stopping the eostrogen blocker, I feel maybe I am not as bad as the surgeon says, no one seems know how the Herceptin works or mutates cells in each individual, we all seem to be unique, age is of no consequence when it comes to treating a human being so a new onc and fast.


Love & Hugs Lyn