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

hermiracles · 08-05-2008, 10:37 AM

Hello dear friends ~ I have just returned home after a week's stay in the local Palliative Care Unit ~ which has been good for me. Life itself has been very hectic and I have had increasing pain.

I am so very, very sorry that I haven't posted in ages - I do love this group - but I have had a hard time coping with the loss of Kate, then Michelle, then Lolly and now Karen! and I hardly knew these wonderful women half as well as many of you here. Really I've been having a hard time coping with my diagnosis - and as the emotional pain has got worse so has the physical.

I had been in contact with the Palliative Care nurses trying to manage my pain at home - but it didn't seem to be working too well. So they suggested I try a stay for a while in the PC ward for pain mangagement and some respite.

Anyways while I was there - they bought my scans forward and found new mets in my lungs - looks like my lungs must have lit up like a Christmas tree - they are 'numerous' and what looks like a met in my brain.

I'm glad I was in a safe place to try and process some of this new information and what it means. The staff and everyone were very kind. Anthony and the bubbas came to visit every day, plus lots of friends & family. I was well looked after and we got to do more work on the legal side of things necessary to ensure that everything is inplace for my bubbas when the time comes. It was all pretty challenging but Im glad we got through it and its good to be home. I even got to have my birthday in there! - can you have your birthday in a Palliative Care Unit!?? - apparently you can - lol! - and really it was a wonderful day - thank You God.

So... what next? Well it looks like the Herceptin hasn't worked particulalry well, so I will probably be switched to Tykerb/Xeloda and at some stage have whole brain radiation. Death itself is certainly becoming much more of a closer reality to me, though I hope it is still a loooonng way off yet!

In the meantime I continue to pray and hope and spend time with my hubby and my beautiful miracles who never cease to amaze me every day with their incredible zest for life and learning and laughter! I do my best to look after myself and I really hope I can spend more time here in the group with each of you - this group has been such a gift in coming to terms with this whole HER2 business - I thank you and Im thinking now that the pain is a bit better controlled I will be more up to contributing. I know Im certainly going to need your love and support that you give so freely and hope I can return some of the same.

So thank you sisters and brothers! (That caregiver forum looks like such a great idea - I'll be letting Anthony know about that one) Thanks for being here and sharing the journey.

Blessings all
Hermiracles

Pam P · 08-05-2008, 10:59 AM

Hermiracles - I am so sorry to hear of the progression and all you've been through. I hope you'll find the tykerb/xeloda a miracle combo for you. I got over 3 yrs of stability on it before I had to switch to a new treatment. The photo of your little babies is so beautiful. What a joy they must be. Praying for effective treatment & better news for you. Blessings, Pam

mts · 08-05-2008, 12:04 PM

Hermiracles...

The little bubbas are absolutely adorable !!!

I really hope that your new Tykerb/Xeloda concoction perform the way they are intendend. Your letter to all of us brings with it sadness yet at the same time much hope.
I pray that things go well so that we can have you back in full force soon.

Warmly,
maria

MJo · 08-05-2008, 12:50 PM

I am glad you got some rest and care in the palliative care unit. A good doctor is a blessing, but there is nothing, and I mean nothing, like a skilled nurse for making you comfortable. I visited a friend of mine in the oncology unit at our local hospital yesterday and she was fast asleep with a smile on her face. I knew it's because she was getting the rest and pampering she needed. When I was in the oncology unit for a few days, they gave me hand massages. Sigh.

I am hoping and praying that the Tykerb/Xeloda beats back your tumors and that you get the three years of stability that Pam enjoyed. After that, there will be another treatment.

Love to you and yours down under.

tricia keegan · 08-05-2008, 01:27 PM

Hermiracles, I'm so sorry to read of this latest progression and will also be keeping you in my thoughts and prayer's for a good response to xeloda/tykerb.
I can only imagine the courage it must take to sort out legalities etc at a time like this and truely hope it's something you can now forget about for a looong time.
My very best to you as you begin this new tx.

CLTann · 08-05-2008, 01:38 PM

Such a well-written message. I thank you for writing it. I also hope that miracle will happen to you and the combination med will be working for you. Good luck.

dhealey · 08-05-2008, 02:35 PM

Praying for a miracle for you. Keep us posted on your progress.
Your two little miracles a just beautiful.

Becca · 08-05-2008, 02:46 PM

Dear BC Sister, I had noticed you had not posted in a long time and was hoping the reason was you were doing well and much involved in the care of your sweet little ones. Your pain must have been terrific and hopefully you have help with it now. Our times are in God's hand--if we can only put our complete trust in his desire for us. Many of your sisters here will be praying that you get better and are able to care for your bubbas. You are special, you are loved. Thanks for sharing what is going on with you.

Bill · 08-05-2008, 03:03 PM

Hermiracles, I'm sorry to hear of your latest scan results. The Tykerb/Xeloda combo. is a good treatment, and alot of women here have been on it and can help you with any questions you may have. Your bubbas are wonderful. They make me smile every time I see them. You are all in my thoughts and prayers, Bill

Mary Anne in TX · 08-05-2008, 03:05 PM

You are a miracle girl! You have produced 2 of the most beautiful little guys I can imagine! Your attitude is amazing. I'm praying for yet another miracle for you and your family with the new treatment scheduled. When does it start?
My prayer for you is that you have to change all those legal documents time and time again as those little bubbas grow up and older and you win battle after battle.
You are so brave and bold and wonderful. Thank you for your note to update us and let us know just what to pray for.
I'm prayin' and believin' for you. Lots of love, ma

R.B. · 08-05-2008, 03:35 PM

Hi Hermiracles,

Thanks for the post.

I have had a look at some of your posts and did not see much on Omega 3s and 6s.

You might like to look at the Greek Diet thread and show it to your Onc if he or she is receptive.

I posted the item below some while ago. It is isolated but thought provoking.

Some work has also been done on Omega Three infusions and various cancers. Infusions would arguably produce much more immediate effects. This is strictly unknown territory and I hesitate to raise it but in the circumstances how could I not.

There are also positive trials with Omega 3 and cachexia.

Omega three has synergies with some chemos. If you have any problems I will do some searches for you to see what I can find.

Clearly it is one for you and your onc if of any interest. I am not qualified and can only try and bring focus on research and papers.

I am sure everybody is very proud of the way you are dealing with this.

R.B.

PS The link seems to have gone I will try and find another one. Here is a summary. http://www.ncbi.nlm.nih.gov/pubmed/16201843 I cannot find the full trial which was online.

Quote:

I post this with caution and trepidation.

It is one report only. I have not followed it up. At face value it looks like a very serious article.

It certainly is VERY thought provoking.

I would stress very strongly that if anybody with no other options is tempted it should only be considered in consultation with professional and with strong regular assessment and follow up - like everything else needs DOUBLE DOUBLE checking as to source etc.

High level fish oil supplementation has on occasions been reported to have adverse effects through excess circulatory effects, thinning etc.

RB

http://www.cabnr.unr.edu/cabnr/newsl...nandcancer.pdf

nitewind · 08-05-2008, 03:41 PM

Hi Hermiracles. I was so happy to see your post today but sorry to hear about the progression. I, like Becca, was hoping that you were just to busy with those beautiful babies to post. I hope you'll continue to post when you have time, we love hearing from you. I can't believe how big the bubbas have gotten. Keep your faith and your attitude and remember there is always something else out there to try as lots of women here can attest. I'm keeping you and your beautiful family in my prayers.
Hugs

WomanofSteel · 08-05-2008, 04:47 PM

Nice to hear from you, but I am so sorry to hear your news. I hope that your new treatment turns things around for you. I will continue to pray with you. In the meantime you enjoy your beautiful family all that you can. Good luck to you!

NanaKaren · 08-05-2008, 04:54 PM

Hermiracles , You have the cutest Bubbas ever! They are so sweet. I am sorry for your progression, but it sounds like a great place to be( Palliative Care) and they were very focased on you. I know that a miracle is on it's way to make you better in no time. You have a lot to live for in your darling children. Lots of Love, NanaKaren

StephN · 08-05-2008, 05:10 PM

Your news is delivered with such verbal skill - I can tell you are more rested and have your thoughts in order.

Miracles are not new to you, and I pray more will come your way in the form of tumor regression, less pain and more happy days with your family.

Hope your docs will decide that you do not need WBR right now, and will treat the single met stereotactically ASAP. I know you have a lot to think about with a new chemo plan, but that met can be treated at the same time. Find a good radiation oncologist. Maybe they can treat some of the bone mets with radiation as well. This has worked out well for many!

{{{{Cyberhugs coming your way! }}}}

BonnieR · 08-05-2008, 05:16 PM

Well, I think the word "miracle" has appeared in most every post here so far. Because we believe in them along with you. Let me add my prayers to the others. And I know you will continue to keep the faith.

Mary Jo · 08-05-2008, 06:44 PM

Hi Hermiracles....I was so happy to see your post yet sad to see that you had progression. BUT, that being said I'm certainly not giving up on you - DEFINITELY NOT!!! Where there is life, there is hope dear sister.

I am praying your new treatment is just what you need to blast these mets right on out of here. I'm also sending you my love and prayers for continued peace and joy as you raise those beautiful bubba's of yours.

Hugs to you "sister!"

Mary Jo

sassy · 08-05-2008, 07:36 PM

Hermiracles,

My prayers are that your rest has given you renewed strength that will combine with your new treatment to bring you to stability.

Each time you speak of your Bubba's it brings a smile to my face and warmth to my heart. Nothing outshines a mother's love.

Keeping you in my thoughts and prayers.

TriciaK · 08-05-2008, 07:44 PM

Hermiracle, though there is sadness in your post, yet the hope shines through, and like all the others here, let me also express love and prayers for you and your sweet family. Just as fear and faith cannot coexist, neither can despair and hope. We will all focus on the hope with you. You are a strong warrior and you have such good reasons to keep fighting. God bless you that the miracles will continue to bless your life for a long time! Hugs, Tricia

Paty · 08-05-2008, 08:04 PM

Dear Hermiracles,

Just a short line to let you know that I will keep you in my prayers, and that I am sending you a big hug. I definetly loved the way you transmitted your thoughts. God bless you.