Need your prayers

I don't even know how to put these words in writing but I am so dissapointed at my mom's situation. We have done the most aggresive tx that I can think of and now they think that there might be something in her bones. It has only been 6 months since she is off the AC/Taxol and is still on Herceptin. I am so dissapointed that I don't know what to do. To top it all off, her onc. is out of town and we don't know anything for sure till next week and we have to wait another week after that for an appointment. Am I being unreasonable or do these people care how nerve wrecking and upsetting dealing with this disease is. Has anyone been through similar situation?
How do you deal with this news. I can't even sleep. It is hard to be support person when you feel like you are not very strong. I am upset with myself for this. I want to get many second opinions but what do you all think is the more important, talking to different people about the treatment options or getting her on something ASAP.

This is a great resource with many wonderful, brave, strong and knowledgeable people and I am so glad you guys are around. Please pray that this to shall pass.

Anne

Anne
The waiting is so hard..we have all been there. What tests did they run on your Mom, A bone scan or tumor markers? Is she having pain that they feel could be bone related? Seems to me if something is found it is very early and thus very treatable. There are many on this board who are bone mets survivors.
You and your Mom are in my prayers for good results.

Hugs

Sheila

[Lolly]

Anne, you and your mom have my prayers and positive support for this waiting period; it's not easy when you want to get going on a treatment, but it's important to have all your ducks in a row before starting this phase, because success hinges on finding the right tx combo. As Sheila said, there ARE

[Lolly]

...oops, hit the send button too soon :)...anyway, as Sheila said, there are quite a few bone mets survivors here who will no doubt weigh in with their experiences and wisdom, so don't despair...You and your mom will be ok, just take one day at a time right now.

<3, Lolly

Dear Anne,
I do know that, to the caregiver, partner, spouse etc, the process seems cold, inhumane and sometimes bordering on incompetent. Doctors are on holidays, scans are booked 4 weeks away, what next? I found the only way to expediate decisions and treatments is to become educated and informed in the disease so if needed, you can challenge the decisions. I know that if treated as an emergency, you can get a same-day scan!
First, search the board for Bone Mets and findout what the treatment options are, what is the first-line tx and what is 2nd line. Find out from the Dr. if there is cance of spine compression, where are the mets, how extensive are they, is it anywhere else.
I wouldn't except waiting another week to find out test results especially if it is for a diagnosis, not monitoring. Sometime you have to take the adversarial position: the doctors may have a large patient load but you only have a load of one! That's how you have to treat it: with informed response. If you need help getting informed, just post it on the board and I'm sure you will get your share of experieinces.
Al

Your family has my prayers too Anne. The waiting is awful. I always think that getting all the info you can and good second opinions are the most important factors in this mess. In my more enlightened moments (they aren't as frequent as I would like, yet) I use these awful waiting periods to research, talk, make other appointments and become empowered by knowledge. This site is awesome for that as are Breast Cancer oncology specialists.

If you are going to go through treatments you want them to be the right one for you and not bother with side effects from ones that aren't the best for you. Supporting the HEALTH that IS there is key to getting through treatment. So making thought out decisions contribute to health in the long run.

I wish the best for your mom and keep us posted.
love, Joy

Anne,

Yes, as Al says, stay informed and pushy if you have to.

But please keep in mind that it is not unusual for mets to appear shortly after or even during chemo. I personally know how frustrating it is. Since fall 2003, I've had mets to liver, bones, brain and lymph nodes. Even now, while I'm on weekly chemo, we think new mets have appeared on the liver. (I'll get a followup PET scan tomorrow.)

There are SO many chemo combos, as well as hormones if needed. Your mom may unfortunately be like me. Herceptin doesn't do the trick alone, but needs chemo to work effectively.

Fight the fight, but try to stay positive. Fear and panic only breeds more fear and panic.

Love and light,

Lisa

Anne,

I forgot to add how important it is to have an oncologist you like and trust. DO search out another one if you and Mom feel the care is not up to par.

Love and light,

Lisa

Anne,

I just want to add one more thing...don't be so hard on yourself. It is INCREDIBLY hard to love someone so much and feel so helpless. You're human, give yourself a break. You'll do the best you can and as long as you do, don't look back. You will have your tough times and your strong times, so recognize that you're not perfect, no one is. Based on what I read, your mother is very lucky to have a daughter that cares so much. What's more, you are STRONG enough to ask for help.

You, like most caregivers, are carrying a heavy burden so recognize that everybody needs help and someone to talk to. If you don't have a family member or friend that you feel you could open up to, then please know that there are many people on this site who will gladly be there fo you. You are not alone!

If you need someone to listen to you, let me know and I will gladly give you my home phone number.

Warmest regards,
Eric

Everyone thank you so much. I often read the posts for people who are seeking prayers and never know quite how to answer. But you guys all made me feel better. Yes the waiting can be torture but my Dad got an appointment for us on Tuesday. I am sorry if I wrote such a somber post, but it takes some time to process the initial shock of another chapter in this battle. I appreciate your kindness and will keep you posted.
Lisa, I worry that Herceptin too early in the treatment has caused the cancer to mutate, like antibiotic resistance. Nobody knows for sure.
Does anyone have an onc at the NIH or John's Hopkins or Lombardi Cancer Center you would reccomend. I feel bad to say this, my mom's onc is a big guy in this area. but a researcher may not always have the time it takes to devote to patients. I worry about this also.
Thanks for listnening.
Anne

Hi there, and I know that horrible feeling in the pit of your stomach trying to convince yourself that it will be OK then thinking at the same time it will be bad news, beating yourself up, I perceive it like the traffic lights where the little green mans says go and then the red man jumps into his globe space and trys to beats him up. I have been doing this since 1998 with many reoccurences and a couple of NED's along the way and I feel that a yes the Herceptin may mutate but in a good way, my original BC was quote, "a fast, agressive ugly cancer with a poor prognosis," well that was then and I past my expiry date of 2002, my BC to the other breast has been different, slow onset and the lymph glands that were biopsied were positive but similar to the original but not the same BC, so fingers crossed this maybe what the Hercptin does, slows it down for us to treat agressively. I pray for you and your mum and this other BC survivors that we get a quick fix real soon.

Love & hugs Lyn