PROGRESSION: lung +++ ?brain mets -> Palliative Care

[madubois63]

Sweetie - I am living proof that miracles do happen, BUT you have to help things along. You have a lot of work to do. It is good that you are honest with yourself and preparing for the worst, but you have 2 of the most important reasons to fight this stupid horrible disease. I agree with RB that you need to change your diet and add complimentary supplements to your diet. Talk to your doctor about speaking to a nutritionist. Most cancer centers/hospitals have them on staff. I don't know if you've know what has been happening to me, so I'll give you a rundown. 8 1/2 years ago I was diagnosed with stage IV Inflammatory bc (not a very good prognosis), but I beat it and had 4 years of remission. It then came back to my lung, liver and far side nodes (even worse prognosis). I beat it again, but then I got acute myeloid leukemia (worse than worse prognosis). I had an unrelated bone marrow transplant and lots of transfusions. My liver rejected the transplant and I was given 3 months to live. I did treatment with horse serum and survived. Then new spots of bc were discovered on my lung again. I started Herceptin and a few other things again and now I have a PET on Thursday to see if the bc is gone. Then I went jaundice again. I had a HUGE iron overload in my liver from having over 70 blood transfusions. I now get phlebotomy weekly (they take blood). I was told it would take over a year to fix the iron/liver problem. Besides the traditional treatments, I use complimentary treatments and have reduced the iron in my liver by half in just 2 months - docs are amazed. I changed my diet and have added supplements that include herbs and lots of green tea, do physical therapy 3 times a week, meditate, do reiki (sometimes), get massages as often as possible and have as much fun as possible. I tell you all this because I want you to see that there is no reason why you can't live to see those little guys grow up!! My kids (not so young anymore - 17 and 19) are my happy place and my reason for taking whatever life dishes out. If you would like to talk, send me a private message and I'll give you my number or call you. You need to clear your head, BREATH and get to work. Please do not let this set back get the best of you!!! Those babies need you...

[ElaineM]

Hi Hermiracles,
I am sorry to hear about the progression. Please take good care of yourself and try to stay positive. I know it is easier said than done, but it is important. I am glad you are getting some TLC from the nurses. I am glad they are there for you when you need them. Sometimes we need that.

[hutchibk]

Please, consider a few things before you start talking about death at your doorstep-

Also, it is probably not a case of "Herceptin not working particularly well for you" - it is a case of Herceptin only being one of the combo of targeted agents that researchers suspect are necessary to turn off all of the pathways that HER2 uses to escape and proliferate. Many of us, (including me) who have already been on Herceptin once, and switched treatments, are already planning for our future to add Herceptin back in WITH Tykerb - and many are getting nice results from that. So don't count Herceptin out at all. It is probably in your future again. But, for now, switching to Tykerb might be a very powerful option for you as it has been for many.

As far as WBR - Please get all the info available here on our site before you agree to that route. If you truly only see one met right now, WBR sounds to me to be overkill (like using a machine gun to kill an ant... it might cause collateral damage and is probably not necessary just yet, maybe never). One small met can better be knocked out with targeted radiation like Cyberknife or Stereotactic, and save WBR as a last resort for sometime in the very very distant future.

The two considerations you need to deal with right now are:

1. What type of treatment will best deal with the lung mets (which many of us have successfully knocked out more than once)

2. What type of treatments will succesfully deal with the one suspected brain met.

Tykerb/Xeloda both cross the blood brain barrier and can help treat and hold brain mets inactive for some time. And potentially help protect the brain from future mets (researchers are currently monitoring that prospect)... I believe that they can also work fairly well on the lung mets. Or it may be that your doc can consider the Tykerb with a different chemo that can deal even more powerfully with the lung mets... and use targeted radiation to knock out the brain met.

There are many options left to work with, several different combinations are possible. There is not only one way to kill or stun this rat that we call Her2 breast cancer... these days doctors are becoming more and more creative in their combinations and they are having some amazing results. One thought might be combining the Herceptin with Tykerb and a chemo which can offer a powerful punch that can treat the body mets as well as brain met. But I am not an ocologist, I just try and keep up with the research and always ask my doc lots of questions. He loves it. Ask Ask Ask your doctor many questions. Be as compelling a patient as possible!! Get your info in order. We can (and will happily) help you put together your list of very informed questions to ask your doctor as you proceed.

Please don't let this get the best of you. I am glad you got some support and rest in the PCU, but you have so many more options. We just have to work on staying as emotionally, mentally and physically strong and healthy as possible so that our doctors can keep throwing whatever they need to at our cancer to knock it back and render it inactive... until it pops up again and then throw the next thing at it. There is a lot in the pipeline and researchers are chasing HER2 pretty feverishly, so please just keep on keeping on and challenge your docs to be visionary and absolutely open-minded and confident in your treatment. Promise them that you will do your part to be as healthy as possible to tolerate whatever you need to fight this for many years...

Progression is only progression... and it can become regression very easily with creative combinations and visionary treatment. Always keep that in mind.

Love, Brenda

[Sherryg683]

I am praying for you. Those beautiful little boys will keep you fighting. I can understand how it can be hard to come to the board when there are losses like Lolly, Karen, Michelle and Kate, it hits too close to home for us stage IV gals. Please know that we are here if you need to vent or someone to talk to. I will pray that they find a combination that will work and knock back those mets..sherryg683

[SoCalGal]

You have a lot of great advice here. Since I just had gamma in February to a brain met I just wanted to add one thing my doc told me. He said in many places without the gamma knife machine - they still use WBR as standard of care for brain mets. Please make sure that they are not suggesting Whole Brain Radiation because there is no gamma knife or sterio-tactic facility available.

I had one met zapped on February 8th. I was in at 7:00AM and home by 11:00AM. It was an amazingly easy procedure - all things considered.

I have mets sprinkled throughout both lungs and also in my sternum and also in some random surrounding lymph nodes near the sternum. Nothing I can feel - all in my body. And then I had the one brain met.

I also started off with Tykerb and am now on Tykerb along with Herceptin & Avastin every 3 weeks. And zometa every 6 weeks for bone mets. It's taken 6 months on this but finally it seems like things are getting better. Please don't give up hope.

PAIN robs you of so much - I know when I was in pain my whole life was shut down and it became about managing that pain. You have many people pulling for you - me included.
xoxo
Flori

[loveher]

i cant believe there are people as strong as you women.
Hermiracles, as a child of a mom with cancer, the best thing my mom's ever done for me is to fight on. so keep going, think positive! im so proud of my mom and im sure your hubbas are gonna be very proud of you too!

[harrie]

Hello hermiracles! So good to hear from you again. I am sending you tons of love straight from my heart to yours.
Take care Precious....
Your bubbas are oh so sweet and beautiful!! Just like you, I'm sure!!
Maryanne (HarrieCanarie)

[Sheila]

Hermiracles
You have been given great advice from the brain mets crew here...please consider it. As far as the herceptin, I must agree it needs a bump...by adding the Tykerb Xeloda and keeping the Herceptin, it may be the magic combo....those little ones need you here, so please remember you are in my prayers that the new treatment with control the mets...you have 2 miracles now, I now you will be blesed with another. Sending much love and a big hug..

[goops]

Hermiracles,

I am so sorry that you are going through so much pain as well as progression. I will pray that they find the right thing to help you.

[AlaskaAngel]

Hermiracles,

Your post is so eloquent. A very intelligent and courageous woman here taught me not to equate any choice about treatments with "giving up".

I especially want to say also that taking care of legal issues is something that we all can do to spare our caregivers and/or surviving family from that added stress, whether or not we have any illness.

Thank you for your gentle wisdom,

AlaskaAngel

[Patb]

I am praying for another miracle for you. You have
received so much good information on this Board so
I cannot add to that but wish you the best. Your
babies are great.
patb

[Joan M]

Hi Hermiracles,

The babies are adorable and they're getting so big!

I'm sorry to hear about the progression. But it's good to know that you got a rest and good care in the palliative unit and that your pain is under control.

Tykerb and Xeloda are a good combination, and then there are always other treatments on the horizon.

You are in my prayers.

Joan

[hermiracles]

You folks are amazing! Thanks you so much for your kind words, encouragement and information! It will take me a bit to understand it all.

There's so much I want to say to you but right now I have to keep it brief - it's 4.30am here in Australia!! I seem to have become insomniac recently! though Im very tired now and obviously do need to go to bed.

Monday I will have what I think is my last dose of Herceptin. Even though I have read the research on the good outcomes with combined herceptin and tykerb - apparently here in Australia you are not allowed to be on them both at the same time! - and if you do start on Tykerb you cant go back onto the herceptin at all!?

Then I will see my Onc after that and discuss more about the next Step.

Thanks so much for sharing your love and courage and wisdom.
Blessings all
Hermiracles




PS My Onc reckons he has patients with lung mets who have been stable for more than 4 years ~ so I guess where's there's life there's hope eh? Anyways how could I give up when I wake up to these 2 smiling faces every morning? :-)) Thanks so much for being here.

[harrie]

Hermiracles, so great to hear from you!! Thanks for the pics of your little miracles!! They are getting so big and just cuter and cuter!!! You are so lucky to have those little ones to give you the strength and courage to do what you gotta do! It is amazing what love can conquer!!
Maryanne

[KathyH]

Dear Friend,
I am so sorry for your difficulty. I have a friend who did not respond to Herceptin but went into complete remission on Tykerb. I will hope and prayer for the same result for you. Your strength amazes me.
Blessings, Kathy H

[G. Ann]

Add my prayers to the group's. There is strength in numbers. Your beautiful spirit shines through your posts. Thanks for sharing pictures of your two miracles--they are so precious. I know you'll be a mother bear as you begin your new treatment.

[Catherine]

Hi Hermiracles,

Your post was so nicely worded. You described your situation so openly and shared the good and the bad with us. The Bubbas are darling and so are you. Glad that the PC was such a respite. (I am not sure if we even have that in the U.S.) Glad you could get the support you richly deserve at the PC. Love and prayers to you and your dear husband and family.

Catherine

[Believe51]

Sorry to hear about your progression, you, your great hubby and those gorgeous bubbas are always in our prayers. Wish I could beat up those cancer cells for you myself!! I cannot believe that those little ones are getting so big, their pictures made my heart smile. Continued prayers and cyber-hugs, today and always!!>>Believe51

[lexigirl]

Hermiracles,

I am sad to read that you have had progression. But, after seeing those beautiful babies smiling, you will find strength and determination to get over this "bump in the road" and continue on to enjoy every minute with your bubbas.

Hugs and Prayers,
Lexi

[Ruth]

Hermiracles ~

Your babies are beautiful and thank you for sharing them with us. You are a special lady and I pray the best for you and your family.

Hugs ~ Ruth