bone mets "too many spots to list"

[Pam P]

I went for my 1st treatment today of taxol/carbo/herceptin. So far this afternoon I feel fine...

It wasn't my day to see the onc., but I ran into him. Last week when we reviewed my pet/ct scan results it said moderate progression in the bones, prominence and intensity and new areas. Then is just gave one specific example of L1 going from a previous SUV of 4.9 to 13. I told my onc. I wasn't happy with the report and that I wanted a more detailed one listing all the spots and SUV levels. My onc. told me today he had talked to the radiologist and 'there are too many spots to list them all"!!! In Dec/Jan there were several spots in vertebrae - maybe 5-6 and maybe 6 ribs. Now I guess it's in the hips, pelvis, not sure where else. The rad is going to send an addendum to the report listing a half dozen of the new/major sites so I can compare those with a future scan to compare if this new treatment is working.

I can't believe this has progressed so much in so little time while I was on taxol/avastin, then gemzar/herceptin for 4 months. Scary. I really need this tch to kick butt now! I'm also looking often and waiting for a t-dm1 trial to open that I fit the criteria for and is close to home. Hopefully there will be one if/when I need to change from TCH.

Thanks for listening to another update!

[MJo]

Yes, you need to beat it back with tch. And we are behind you as you kick butt! It must be very cold up there in Minnesota. Lots of Scandinavians up there. I picture you with a Viking helmet and a mace, pulverizing those cancer cells.

[Laurel]

Pam, I just hate your news! Don't care, I'm gonna swear...cover your eyes everyone! I hate this damn disease!

You fight and lick every mutated cell!

No, I do not feel better and won't until we have good news coming from you, Pam. You will be in my prayers.

[Mary Anne in TX]

Pam, I hate your news, but I love your hard-headedness that keeps on keeping on! I'll bet the big bad TCH knocks those pesky mets out! I'm praying for you. ma

[Believe51]

Breathe with me Pam, I know this is not the news we wanted to hear, I am saddened once again. You do need this treatment to work and I am praying for great results getting these nasties destroyed. Controlling these spots will be some work to catch up on but Ed can be your bone met mascot and living proof. He has been able to keep the bone mets under some kind of control and that is not too bad a track record for almost 3 years. My wishes are the same for you Lovey. Are there any large, more problemed spots that might be a radiation option in the meantime of destructing them nasties?? I would suggest that you keep an eye on any pain and be prepared beforehand just in case you need pain medication. We are going to sit here and watch you beat the living crap out of these newest mets....and Pam, we will surely triump right along with you when you do. If there is anything I can help you with please feel free to ask.>>Love>>Believe51

[suzan w]

I will add my swears and cuss words about cancer to the others...and my FIGHT cheer for you! xox Suzan

[Becky]

Ask for Faslodex and/or Aromosin to be added to your treatment plan. Explore your ER+ options!! I am thinking about you.

[juanita]

sending more cuss words and lots of prayers too!

[Mary Jo]

Just wanted to send you a hug.....my support and encouragement and a loud DAMN!

God's Peace to you Pam,

Mary Jo

[vickie h]

Dearest Pam, Hate that news but keeping your recovery foremost in my heart. Keep brething deeply and believing that the TCH is going to work. I echo everyones thoughts about this fight...you're in it to win. You are strong, magnificent in fortitude, and walking the path to obliteration of those mets!
Sending you prayers,
Vickie

[hutchibk]

TCH - pretty potent. Should be very efficient at butt kicking! If you don't get pretty quick response (2-3 rounds) ask about Abraxane in place of Taxol. Keep us posted!!

[Paty]

Pam,

I also send you a very big hug and my prayers for you and all the sisters that are going through difficult moments right now.

All my love,

Paty

[caya]

Pam,

I am also sending big hugs and prayers your way from the Great White North.

all the best
caya

[michka]

Dear Pam. I hope the new combo will wipe everything out! Please continue to give us news. Sending hugs. Michka

[Pam P]

Thank you for all of your kind thoughts and prayers.

After yesterday's 1st TCH treatment I feel pretty good so far - no s/e, except I slept a lot yesterday. I refuse to take benedryl so that wasn't it. But I did have acupunture after chemo so maybe that impacted the sleepiness. Then when I went to bed I couldn't go to sleep right away & worried that the 10 mg of dex was going to keep me up so I took an ativan and slept well.

I told the acupunturist about the many bone mets & he used some points that are specific for bone health/grow. I'm new at this acupunture - only my 3rd treatment so I don't know if anything is changing yet, but I'm planning to keep going with it for a few months anyway to give it a good try.

By the way I'm not having any pain that I can identify as 'bone met' pain. Only some occasional aches that I attibrute with to muscle strains, aging body, sleeping wrong on a shoulder, etc.

I'll add my "DAMN disease" voice to your comments as well. My cousin who I'd just visited in CA emailed me in response to my news that she stomped around her whole house saying damn, damn, damn... when she read my news. (Sorry, Joe, I've gone way over my quota of cuss words in print)

[Sheila]

Pam
I too am swearing after reading you post...but positive thoughts are there that the TCH will kick butt, kill cellls and leave you with good news. I agree that if the T isnt working, maybe a switch to Abraxane...some times you just have to make the perfect cocktail to get that big response! If they open a trial for T-DM1 that you qualify for close to me here in Illinois, you are welcome to come stay with me! Sending love and prayers Pam....tomorrow will be a new day!

[StephN]

Dear Pam -
Adding my prayers and positive wishes to all the otbers. Throwing in a few 4 letter words as well for good measure.
"When the going gets tough, the Tough get going." I always like this old saw - it does have relevance.

Are you doing anything special with your diet? Convenience foods are not good for cancer fighting. Fresh, fresh, fresh. Cut fats and sugar. I am sure you do these things, but sometimes we need to redouble our efforts.

[Joan M]

Pam,

I dont' blame you for asking for more specific information regarding your scan. The more information you have the better equipped you'll be to make decisions about your treatment.

I'm praying for the tch combo to blast the cancer cells.

Joan

[TriciaK]

Add my thoughts and prayers to the list, Pam. I am so sorry to hear your frustrating news. All of us here know how scary such news is, but we also know you are one of those amazin' Amazon warriors! Also, I wonder, since you are in Minnisota, if you are Scandanavian? All my paternal great grandparents came from Sweden so I am half Swede. I know "stubborn" is a descriptor for Swedes. (At least my mom, who wasn't Swedish, used to say when I showed a stubborn streak, "Stubborn--just like your dad!") Stubborn makes good fighters! And we don't give up! Even if you aren't Scandanavian, you are a fighter, so hang in, know we are all praying for you, and sending our love and best wishes. Hugs, Tricia

[alicem]

Pam -

You are such a warrior. I so love your spirit. I am not a "cussing" woman but I agree this is one damn disease. There is another word I hate to hear used these days, but I broke down and bought some biking socks the other day because they so express my feelings . . . they are pink and say "CANCER SUCKS" on the cuff. I want to make sure all the car drivers who see me when I'm out riding my bike know just where I stand on the matter!


Love, Alice

[tricia keegan]

Just wanted to add my good wishes Pam, hope this regime works quickly for you:)

[chrisy]

pam, sorry the news wasn't what you were hoping to hear.

I read a book (one of those how I beat my cancer books - sometimes I hate those!) but this one had one memorable concept:

Positive news is FANTASTIC!! FABULOUS!!
Not positive news is...just information.

So, you have some more information - this will make it easier to follow what the treatment is doing.

Take care
Chris

[hutchibk]

Are you getting Zometa?

[Jean]

Dear Pam,
Thinking of you and saying special prayers that the TC
shuts down those nasty cells.

Hugs,
Jean

[Midwest Alice]

Dear Pam, You will be kicking this IBC once again! I pray you get a long run with this new treatment.

Question:I have looked around a little to find out History of T-DM1. TCH is Taxol/Carbo/Herception. Is Carbo a chemo? What in T-DM1 are chemo?

Now if it is intended for me to go to SABCS I will be there and I will be looking for new treatments for you. I will be asking questions and a voice for all us IBCer!!

I'm so proud to call you my friend. I talk about you to all my friends all the time. Many prayer are comming you way.

You are not alone, I will fight the fight too!

Love Alice

[Shobha]

Pam,

Adding my prayers for TCH to beat out the cancer. I too love your spirit and feel a ring of positive note even as you declare war against it!

God bless you with victory!

love,
shobha

[Terri B]

Pam,

Hang in there, girl! We are all thinking about you and praying for strength for you!

[Pam P]

Thank you all for your wonderful support! I feel pretty good after my 1st TCH last Wed. I'm having lots of pain in my left hip, and a few other places that come & go, but hard to know: bone mets? TCH chemo bone pain? I restarted my water fitness class and me be sore from exercise. Who knows. I'm really fretting over this 'more spots to list' news and praying that it can turn around for the better with TCH. I'll get the addendum to the pet/ct report when I go on Wed. then can see where some of the new spots are & how large they are. Hope everyone had a good weekend. I treated myself to an original oil painting I found on Craigslist - I love it.

[chrisy]

Alice,
"Question:I have looked around a little to find out History of T-DM1. TCH is Taxol/Carbo/Herception. Is Carbo a chemo? What in T-DM1 are chemo?"

Carbo (carboplatin) is a chemo.

T-DM1 is actually "Trastuzumab-MCC-DM1" and is a an experimental chemo called DM1 which is chemically linked (the "link" is MCC) to Trastuzumab/Herceptin.

So in T-DM1, the T is Herceptin and DM1 is the chemo, but they are not separate agents, they are combined into one.

It is not yet FDA approved for anything - so is only available in a clinical trial (of which there are several). Presumably the drug will be submitted for approval in early 2010.


Hope that helps.

[chrisy]

Pam,

Good for you on the "retail therapy" as well as renewing your exercise program. As you know, you want to continue to get as much exercise as possible.

As you say, hard to know what is behind the bone pain - could be treatment related and a "good" sign. TCH is pretty powerful stuff.

Don't forget, the scan is just information and will be most useful in comparison to your future scans as you track the effectiveness of the TCH. Like when it says "bla bla bla on previous scan is not seen"

Hang in there, we are all sending good vibes and prayers.
Chris

[Patb]

I just wanted to tell you I wish you the best with
your treatment and I will be praying and sending
healing thoughts daily while you are in this treatment.
Take care
patb

[Carolyns]

Hi Pam,
I am sorry to hear about your news… but I am with Chrisy and I would call it information. Sometimes the news is just the news. I don’t know if it helps but when I was diagnosed with Stage IV they said that I had the spray paint effect… meaning that I had mets on every bone that looked like spray paint. That was 3.5 years ago and I have been on Zometa (and a bunch of other things) ever since. My doctor always tells me that bones are so hard to read…
I am glad to hear that your treatment went well and that you have done some retail therapy. I have my fingers crossed that this will be your magic mix.
Love, Hope, Peace, Carolyn

[Pam P]

Chrisy and Carolyn - I like the thoughts that the scan is only information - something to compare to for the next scan. I'm going with that!

Carolyn - are your mets "just" in your bones too? What else has worked for you in addition to the zometa? Are you on a chemo now? I'm on zometa. None of the femara, faslodex, etc. worked for me; chemo seems to be best for me to keep stable.

Thanks again everyone for your support; can't begin to tell you how much it helps!

[schoonder]

Genentech just listed a new t-dm1 trial on clinicaltrials.gov registry.
http://www.clinicaltrials.gov/ct2/show/NCT00951665?term=t-dm1&rank=5

[Carolyns]

Hi Pam,

I have mets in - bones, liver, skin, nodes (including near bile duct to liver). I have these weird lumps (thickening areas) that pop up when the chemo stops working. I have one on my neck and another on my chest. Once I find a good treatment they immediately go flat. I almost imagine them to be like that thermometer that comes pre-placed in those turkey breasts and it pops out when the bird is ready. You know we must have a good sense of humor about this.

I looked at your treatments and I have had most of the same combos you have had. Hormonals only gave me a mixed response meaning that the nodes and skin would get better and the liver would get worse.

I was not able to tolerate Carboplatin. I only had one dose. The TDM1 trial that I am trying to get into allows for many previous lines of therapy. The objective of this trial is to monitor heart function. The qualification that I needed was to show progression on my current therapy which was (as of two weeks ago) Xeloda and Tykerb. I am progressing.

I hope this helps and that you are enjoying your oil painting.

Love, Hope, Peace, Carolyn

[schoolteacher]

Pam,

I was wondering how you have been this week? You are in my prayers and thoughts.

Amelia

[jones7676]

I am thinking of you and I am also hoping that trial opens near me soon as well.

I hope things improve for you soon.....

[Sherryg683]

I am so sorry , this is such a crappy disease. May God be with you during this round of treatment..sherryg

[mmoons]

Pam-

You are really so much in my mind and heart. I have been traveling so am now getting caught back up.

I just am so mad that you got this news, But I love your spirit and know this will be the perfect regime for you to kick this sucky disease.

Sending you prayers and healing thoughts,

Maureen

[Karen Wheel]

Don't quit girl! I'm with the option of diet - along with acupunture ... fresh - and veg --- lots of it. Its hard but we have talked about this before. But this along with great medicines give your body the best options for beating back the big C.

I have done acupunture for years and it really does help but it isn't over night (yes sometimes you see a big change right away) but I found that I felt a great sensation when they did the therapy but didn't always "feel' that much different immediately after, or from day to day. I believe it was the little changes that it did to balance my body that really helped. I also do Reiki - energy work - which really helps to balance the overall body and energy of our systems. So keep with this therapy with the new drugs - we have to believe that they can work together to stop the buggers in their tracks!

Keep up the faith! :-) Karen

[Pam P]

Thanks again for all your help. Carolyn - thanks for sharing with me your history of this disease. After my 2nd treatment last Wed. I've not felt as well. I've had lots of problems with diarrhea and can't seem to get it resolved. I've been taking imodium, but I need to get something stronger I think. And yesterday I felt nausea, weak, and dizzy. I've lost a lot of weight since starting I think because of the diarrhea. I don't have much appetite and am trying to eat lightly to give my stomach a rest. I see the PA when I go to my treatment this Wed. so maybe she can suggest some things to help. Any ideas from you wise women?

[Midwest Alice]

Hey Pam, Good morning, Sorry your not feeling well. Try the "brat" diet.
B- bananas
R-rice
A- applesauce
T- toast

Let me know if it works. It use to work for my children.

Love ya Pam, Alice

[Karen Wheel]

Pam - I sent this earlier on another thread - but think it could help with your stomach issues....

I have found a really good active culture capsule that is manufactured in the UK but it is sold from a company out of Redmond Washington... but my handy-dandy trusted health god-pharmicist recommended this to me when I was back in the states in November - and I had a bad case of food poisoning ... and without drugs these just healed me up in like days! I still had some here in Italy (safely stored in the fridge) but the name is:
HLC high potency capsules -
by: Pharmax LLC. Redmond, Washington.

The pharmacy is "Clarks Pharmacy" in Redmond (it is literally next door to Microsoft) ;-) But you could call them and have them ship you some - if I remember it was around 20 bucks - a bottle or maybe 30 but it was fabulous! I would highly recommned this for a distroyed stomach - and much quicker than active yogurts - most of these have little effect by the time the actually get to your hands (or your personal fridge) .... yes, they were alive when they were packaged but they die easily.

My guy said these capsules were the best he had found in all his searches - and he was right - I was sold! I'm having my friend bring me a fresh bottle next month when she visits from Redmond. As they will keep for up to a year in the fridge....

Hope this helps - try it! :-) Karen

[Sheila]

Pam, I am so sorry to hear you are having issues....I agree with midwest Alice on the BRAT diet...it worked many times for my children and myself. Also, ask the Dr to give you some Lomotil...a prescription anti-diarrhea drug...just take as ordered so you dont overdo it. It is a med they use for uncontrolled diarrhea.
As far as supplements, I wouldnt take anything unless approved by your oncologist....they can mess up the action of the chemo and you certainly dont want that.
You are in my thoughts and prayers Pam that thinks will get easier for you on the chemo.

[Karen Wheel]

Thot this posted but now it doesn't show ---? Hummm - will try again ---

Pam - I sent this to "jones" on her worried thread a bit ago but thought it might help your stomach issues as well.

I have found a really good active culture capsule that is manufactured in the UK but it is sold from a company out of Redmond Washington... but my handy-dandy trusted health god-pharmicist recommended this to me when I was back in the states in November - and I had a bad case of food poisoning ... and without drugs these just healed me up in like days! I still had some here in Italy (safely stored in the fridge) but the name is:
HLC high potency capsules -
by: Pharmax LLC. Redmond, Washington.

The pharmacy is "Clarks Pharmacy" in Redmond (it is literally next door to Microsoft) ;-) But you could call them and have them ship you some - if I remember it was around 20 bucks - a bottle or maybe 30 but it was fabulous! I would highly recommned this for a distroyed stomach - and much quicker than active yogurts - most of these have little effect by the time the actually get to your hands (or your personal fridge) .... yes, they were alive when they were packaged but they die easily.

My guy said these capsules were the best he had found in all his searches - and he was right - I was sold! I'm having my friend bring me a fresh bottle next month when she visits from Redmond. As they will keep for up to a year in the fridge....

Hope this helps - try it! At least give the pharmacy a call and ask to talk to the pharmacist (sorry, can't remember his name but its a guy and its a small private pharmacy and they are super nice and helpful) so you can ask him what he thinks and to explain how this helps with stomach issues - remember we Cancer Survivors are taking lots of meds and these really run havic with out systems and the flora and natural good bacteria in our insides - this might be just the thing to give you some more relief!!!

:-) Karen