pet/ct results - questions too

[Pam P]

I got a copy of my results today, but won't see my onc. until tomorrow. Pet/ct states progression.

I have bone mets & the report says they are increased in size, number and prominance. Not what I want to hear. I go to a new scanning place now & the report doesn't itemize which areas like the other place did. I used to get a report that said each bone & the SUV # for each. I know the mets were just in ribs/vertabrae before, but with this report it doesn't say where the new ones are. I think I'll call & see if I can get a more specific report.

In addition.... it says my pleural effusions have increased. I've had these for years, but they showed increase several months ago I think as a result of being on avastin and then decreased slightly again. But I'm off avastin now and the left one has gone from 3.0 to 4.9.

The report also says increasing bibasilar pulmonary atelectasis. Does this mean that is due to the increased effusion? or is this a new situation. Does it mean possibly lung mets? The report says lungs otherwise appear unremarkable. (When I first got p/e they tested the fluid & it didn't show cancer - it was determined that the taxotere I was on at the time caused it.)

My ca2729 also has been rising so I know when I see the onc. tomorrow he will decide to change me chemo treatment. I've been on gemzar/herceptin now since Feb. It has been such an easy combo for me to tolerate. I don't know what he'll suggest, but I know last month he mentioned either taxol/carbo (which I'm scared of as I've heard the carbo is really hard), or abraxane, or ixempra, or doxil, which I don't want to do because of the risk with herceptin & I want to stay on herceptin. If anyone has reason to think I should push for one drug over the other I'd like to hear from you.

Also --- I saw my chiropractor today. I see her occasionally - maybe 5-6 times per year. She's been suggesting I come more regularly as she says there's tons of research that the chiroparctic treatments do so much good to boost the immune system & is good for fighting cancer. She says if it was her she'd be getting a treatment every week. I know she's not just trying to increase her sales - she's also a friend and gives me free adjustments often. Do any of you do chiroprator treatments as part of your additional treatments for cancer?

Another question --- what about acupunture? Do any of you get this to help with preventing progression? I know it helps with alleviating side effects, but I think there are other benefits. I only had 1 treatment a few Not fond of needles, but am willing to try it some more if it could help with staying healthy!

I'm trying not to get panickly, but the progression report is scary as well as having to start another unknown chemo drug. Thanks for reading and thanks for any suggestions & info. Pam

[ElaineM]

I am sorry to read your post. Keep your chin up girl !!
By the way, have you ever tried Tykerb in combination with Herceptin. Sometimes drugs work differently in different combinations. For example two drugs may not have worked well with each other, but if you separate those two drugs and use them with other combinations they may work better.
Keep on truckin Pam !!!!!!! Hang in there and keep putting one foot in front of the other.

[chrisy]

Pam,
Oh shoot, I just clicked out of the window after typing a long reply. Must not have been very important or the computer powers that be wouldn't have let that happen.

I hate that you got news you didn't want to hear. Even though we know that eventually treatments may fail, we still (at least I do) hope for long long runs and it is always a crushing blow.

You or your doctor should be able to get more detail on the reports if you want. My experience has been that if it doesn't change a treatment recommendation they are reluctant to "send it back" but it can be done. Eventually the lab learns that doctor x wants to see the details.

I only have experience with taxol/carbo/herceptin so I can't comment on abraxane, ixempra or doxil except to suggest that you have had good results with the taxanes, so abraxane might be a good option and can be given with Herceptin.

When I had TCH I thought I tolerated it pretty well, so don't claim horrible side effects from this until/unless you get them. I'd agree tho, you want to stay on some her2 targeted agent.

Re the chiropractor, I have a couple of not too scientific comments. First, I'd be very very cautious about getting "cracked" (I know, they hate it when you call it that!) when dealing with bone mets. Especially if you do not know where they are! Even a gentle adjustment might put you at risk. If you're well away from any "hot spots" it probably wouldn't hurt.

I have not seen research on chiropractic and the immune system, but it partly works on the theory of freeing up the "communication channels" so who knows.

Acupuncture has a lot of research but not really suggesting that it will cure cancer. More in the nature of improving symptoms and overall immune function and "balance of chi". While I was getting TCH I had regular accupressure which is similar but without the needles, and I believe it helped me manage the chemo better as well as help with my blood counts. I definitely put acupuncture in the category of "won't hurt, might help". And really, Pam, we are SO beyond fear of little needles by now! I think they're much smaller than infusion ones...

I know you're tired and discouraged....but time to saddle up again my friend.

[Sheila]

Pam
It was so great talking to you..the electricity is on again...you will be in my thoughts & prayers tomorrow!
Think positive!

[Barbara H.]

Hi Pam,
There will a new T-DM1 trial out very soon. I would request that you oncologist try to get you on it or see if there is a center not far from you that is conducting the trial. It is a very easy drug to tolerate, is targeted therapy, and I will have been on it for two years in September.
Good luck tomorrow.
Barbara H.

[Pam P]

Thanks Sheila, Elaine & Chrisy for your well wishes.

Sheila - Thank you for the call.

Elaine - I have had tykerb, but not with herceptin. I can bring that up tomorrow.

Chrisy - I see you were on TCH for 5 months then stable/off chemo for 2 yrs. That was a great length of time. Maybe I should think better of it! Tell me specifically how it was for you - type of side effects, fatigue, etc.
Also I notice you live in Scotts Valley - I'd forgotten that. I just spent 10 days with my cousin in Santa Cruz. Actually we were in SV once for lunch at a rib place that was pretty good. I could have arranged to meet you. I have an open invitation to visit her so hopefully will do so again before too long. Maybe next time we could get together. My cousin lives in Live Oak at Pleasure Point.

I wish I could get in the T-Mcc Dm1 trial. So far - like so many others - I haven't met the criteria.

[Pam P]

Barbara - Do you know more about when/where for the new trial? I just checked the clinical trials website and there's nothing new there yet. Thanks. Pam

[chrisy]

Hi Pam,
I did get a good run from the TCH - but remember I was "chemo naive" at the time!

Not having other hard chemos to compare it to, I had side effects including hat head (I had to wear a hat because I had no hair!), increasing fatigue as the months wore on, and mild neuropathy. As I mentioned, I had "energy work" throughout and really believe this helped keep my counts up - I never had to get any boosters of any kind. But then again, this is Santa Cruz...

I managed the neuropathy with a large menu of supplements recommended by my oncologist. I had good premeds, and never once had any nausea or digestive problems. I was also able to get reduced decadron dose which helped - but would be unnecessary if you were getting abraxane.

I worked throughout, but admittedly was pretty much useless in terms of brain work by the end. But at the time I thought I was doing great and was lucky enough to have employers and peers who didn't mind me sitting in meetings with a stupid look on my face!

Next time you are out here, please do let me know - I work in the Seabright area which is not far from where your cousin lives...believe it or not, I've been to Minneapolis several times in the past year on business. I have foodie stories about that, too - have you had the dessert trio at The Local?! OMG!

BTW, I also asked at UCSF if they had any DM! trials opening and they do not there, but I know there are new ones opening and hopefully Genentech may begin to offer some sort of early access program for those who havent' been able to qualify for trials.

Hope you and your doctor are able to come up with some great options.
Chris

[Barbara H.]

I saw my oncologist, Dr. Krop, two weeks ago, and he said I could post it on the HER2 website that new trials would be opening up in a few weeks. One will be at the Dana Farber. Perhaps the Dana Farber knows where the other sites will be. I also agree with Christy. Call Genentech. I also have bone mets and had to stay off chemo for many months to become elegable for this trial. I was in quite a bit of pain, and was averaging two hours of sleep a night. Two days after I started this drug I was pain free. I really hope you can get on this trial. I would fight for it. If you can't, at least you know that T-DM1 will eventually be available for you.

Best wishes,
Barbara H.

[Lori R]

Pam,
So sorry to hear that you have to change horses again. But, I am sure we can help you find a good one!!

I agree with Chrisy and Barbara regarding finding a TDM1 trial, results sound impressive. I opted for now to try another Chemo and chose Abraxane.

That said....I am beginning my 3rd cycle of Abraxane tomorrow. It is worth asking your onc about. A recent study (posted here) showed that Abraxane was more effective than taxotere with fewer side effects. As Chrisy said. No premeds, which has been a surprisingly good thing...I forgot how sad steroids made me.

Of course, the key is whether it is working. I haven't had a follow up Pet/CT yet, so I'll let you know. (tumor markers don't register for me) I am thinking my Pet/CT will be in a couple of weeks.

Abraxane has been VERY easy to tolerate. No nail issues, No neuropathy. While my hair has thinned, I haven't lost it. But I must caveat that after taxotere, my hair is so thin I continue to wear a wig and it has the texture of cotton candy. But hey....the few hairs I had are remaining.

Given Joy's struggles on Ixempra, I'd give Abraxane a try.

Hang in there!!! We'll help you choose the best option.

Lots a love....Lori

[mmoons]

Hi Pam-

I am praying that your oncologist appointment today goes well and that your next course of treatment will be the very best for you...and that your side effects are minimal. You are deep in my thoughts today, Pam.

With love,

Maureen

[DonnaD]

Hi Pam,
On my walk this morning I was thinking and praying for you. I hope your appointment goes well today and you and your onc come up with the right piece to your puzzle.

Eager to hear your next step. Please keep us informed.

I am so glad Sheila called you. She can brighten anyones day with her knowledge and tender caring ways.

Hugs,
Donna

[Mary Jo]

Morning Pam.....

Adding my prayers for your day today. The Lord will be bomarded with requests for you dear one.

Peace to you....

Mary Jo

[Pam P]

Taxol, Carbo, & Herceptin is the treatment my onc. has decided is the best move for me. He says T &C work very synergistically together. I've had taxol before, but the carbo is new. I am willing to trust that my onc. is choosing well among the options. If it doesn't work then I have the other options to go with.

I will start this combo next Wed. I'm very nervous about the carbo as I've heard it's a tough one. If you've done this combo please tell me how it is/was for you. My doses will be 3 wks on, 1week off.

There is no t-mcc dm1 trial available to me right now. I voiced my frustration about this today & my onc. said "I'll be around to eventually get it - either in future trial or at approval." So I guess patience for me on that one & good he thinks I'll be here to get it!

I did go to an acupunturist today too. I figured that if this combo is going to be a tough one I'm going to be extra aggressive in trying to boost my immune system as much as possible with acupunture 2x week to start then 1x week. I've never done this before so will see if it makes a difference for me.

Thank you all for your thoughts and prayers!

[Joan M]

Pam,

Wishing you the best with the T&C regimen. I've also heard that C can be a hard drug to take, but I think there's been good results with it.

Let us know about the acupunture, whether you think it helps. I've thought about doing it.

Joan

[Sheila]

Pam
Great to talk again tonight...wish we didnt live so far apart...I forgot to ask wat the Dr had to say about the lungs....you are in my thoughts and prayers Pam, that this will be easy for you!

[Joe]

Genentech will update us when new trials are started.

Regards
Joe

[chrisy]

Pam,
I like the comment "you'll be around to eventually get it"! Those approvals can take a while, you know

[Pam P]

I like that comment too and am going to hold him to his word on it!!

[ElaineM]

Good luck with your new treatment. I give acupuncture a thumbs up !! I have been getting it fairly regularly for over 10 years.