Only "slight" decrease on PET....is it time

[Chelee]

to change chemo combo or give it more time? I started on Herceptin/Zometa the last wk of Sept. but as most of you know couldn't add chemo until I had my femur surgery & recovered. But now it's been two months since we added the Navelbine and I see there is "only" a slight decrease in axilla area. The mild activity that was seen on liver is now gone...so that's good. Also mentioned is shotty cervical lymph nodes slightly increased. (That WASN'T even mentioned on my last PET/CT...so I don't know where that came from?) Why wasn't it on my last pet report?

I also see that there is an "increase" sclerosis of the left ilium which may be progression? I was hoping it would knock down any bone mets too.

So how much time is usually given to see a good response? I was hoping to stay on this Navelbine/Herceptin/Zometa combo for a while since it's easier to tolerate then others. It did show improvement in axilla and liver...but it's up in the air about two areas of bone mets?

Am I expecting too much for 2 months of Navelbine combo...or should I give it more time? I don't know what the normal time frame is before switching to something else? I see my onc Monday to sort thur this...but rather hear from my Her2 sisters that have been thru this. I want to be prepared for my appt with her! (My Tumor markers dropped with this combo also.)

Chelee

[Becky]

Did you change hormonals? I think you were taking Femara, right? Why not try changing to Aromosin? There were studies on changing to that if on Arimidex/Femara (and had failure) and that the switch to Aromosin was a good one.

[Rich66]

Seems like you need to know if whatever increased is clearly cancer. The PET only scan can be influenced by inflammation to some degree. You mention a couple areas of decrease. Is the femur area still good? Not much better than Zometa until Denosumab gets approved. Although..could consider adding Doxycycline (http://her2support.org/vbulletin/showthread.php?p=221846#post221846) or get it 24 hrs after chemo (http://her2support.org/vbulletin/showthread.php?t=39563) for potential tissue benefit as well. Have you had the Navelbine at the recommended intervals and dosing? I remember there were some schedule disruptions. If necessary, you could add in Xeloda (http://her2support.org/vbulletin/showthread.php?t=42261) before leaving the 'bine behind.
Sister Rich66

[Chelee]

Becky, I'm not on Femara right now. I have been asking about being put on an AI or Faslodex since before my femur surgery. I never got a answer! But since the biospy my Ortho onc took of the mass on my femur...the path report shows I'm now 60% Er pos. where as I use to be weakly pos. So I told my onc shouldn't I be on an AI or Faslodex?! She said you can't when your having rads. (I was set-up at that time to see my radiation onc for my femur.) I don't know if that's true or not...but she said I should not be on it? Being on Femara since before my surgery might of made all the difference.

I did NOT like the rads onc that was going to do my hip and just talked to my City of Hope Ortho yesterday. I mentioned I didn't like this Rads onc and he is setting something up for me.

So can I be on an AI while doing rads or not? I've heard from some that I can...and others say no. Which is it? If you aren't suppose to take an AI while doing rads...then couldn't I of still taken Femara and quit taking it once I started rads?

Chelee

[Rich66]

You probably could..they probably won't. There were more concerns years ago about a possible conflict. Seems like it is proving to be false in prostate cancer (http://firstwatch.jwatch.org/cgi/content/full/2008/1216/3) while research in breast cancer is lagging. So..looks like the theoretical reasons for not combining them (same reasons as with chemo-endocrine) are being dismantled..but I bet most are going to stick with keeping them separate for now.

[Chelee]

Rich, Exactly...that's what I've been told. Things have changed. So many women I know of "online" told me they did have rads while on an AI...and others said no. Seems to be up to the person's onc. When I talked to my radiation onc...he said I could be on an AI...it was no problem. So lets see what my onc says this Monday when I tell her the Rads Onc said it was ok to be on an AI. I wish they would all get on the same page...it is beyond frustrating to patients like myself.

Chelee

[Chelee]

Rich, You make a good point to my first question about changing chemo combo's. I'm not clear yet about the mentioned "increase". It does not say for sure it's cancer. As to my femur the PET doesn't say anything about it other then mentioning there was interval internal fixation of right femur. I'll have to see what my onc says. The PET did not mention any activity on right femur so that is a good thing.

As to the dosing intervals for Navelbine...my onc started me out at the regular dose but since my counts tanked she decreased my dose each wk to almost nothing. I wasn't happy with her when I found that out. She could of been giving me Neupogen right away versas decreasing my dose of Navelbine. I started out wkly on Navy beans...then because she left for a "month" she changed my schedule to every 2 wks while she was away. So I can't help but wonder if I would of had better results had she not reduced my dose 3 wks in a row?!

That's why I'm still hoping some stage IV gals might weight in here. How long before you should see a good decrease in all area's? Is two months long enough or not? I'll make sure we stay on the full dose of Navelbine this time. No more short changing me.

Chelee

[Adriana Mangus]

Dear Cheele,

I was on navelbine a least twice and it did work for me. It brought me down to NED, both times.

My oncologist said that as long as the numbers + pet scan were stable he was going to continue the navelbine. I agreed.

The number (tumor marker), alone is not sufficient information to make a sound decision, especially in your situation. I sense urgency and anxiety in your postings, you need to sit down with your oncologist and review your records.

For example; how long did you stay on in your last chemo, did your tumor marker number change? how long after the last chemo combo you had, did the number change? What about the Pet-Scan? Do the numbers, low or high, relate to the pet scan results? These type of questions you need to discuss with your oncologist.

I've had anxiety periods in which I don't know what to believe, --am sure you understand,- - so please remember you are not alone, I do understand what you are going through. Have confidence you will find the right treatment to fit your specific medical needs.

Much Love,

Adriana

[Lori R]

Chelee,
Oh how I know the anxiety of spinning the chemo wheel of fortune and hoping for the jackpot!! Based on your post, I am thinking the "bean" is working for you. OK....maybe not an immediate jackpot but it is driving down key metrics.

The Good
Decreased activity in auxilla
Eliminated Liver activity (from a liver mets gal this is a HUGE score)
Tumor markers dropping

The uncerain

[Lori R]

OOPS...don't know what I did...hit enter too soon?

And then uncerainty in the left illium.

I think you have some BIG wins going here and should give it more time. If it continues to drive down markers and you can get some clarity around these other areas of interest you'll be in good shape.

Make sense???

You've been so strong and so diligent, I hate to see you jump ship too soon.

Thinking of you....Lori

[Rich66]

Yeah Chelee,
Think of getting an antibiotic and the importance of staying the course for efficacy. I can't imagine it makes no difference in chemo. it makes no sense to abandon a tool if it hasn't been administered for full benefit. Once it's behind you, it's hard to get anyone to try it again. You seem to have had an almost mirror image dosing experience as my mom...even though most here have not. Again, Xeloda seems to be a good companion if and when a new path is needed..especially if it's not a clear failure.
The increased ER activity in the bone might suggest the crosstalk might be swinging slightly away from Herceptin towards ER. So paying attention to the both ends seems prudent. Faslodex or Femara seem like good options.
And if the onc wants to make a whole scale change in the future, Tykerb/Xeloda and Tykerb/Femara are approved. In your case, Tykerb/Xeloda/Femara would seem justifiable...if needed....

Adriana,
Did you maintain normal dosing and schedule of Navelbine? Did you get wbc support?

[Lien]

Hi Chelee,

I have no wisdom on chemo, but just wanted to let you know I understand your anxiety. You don't really trust your onc, because she doesn't seem to really listen to what you say, and she doesn't explain her reasons for her decisions very well. Or at all. This causes you to be anxious and worried about the wisdom of her decisions. I think that's what you need to discuss with her first. Now this may be hard for you, as she is not the easiest person to talk to, I gather. You may need to manipulate her a little.

Perhaps it would help to put it like this:

Dear Dr. X, I was glad to hear that my markers are going down and that there seems to be improvement in liver and other areas. I am still very scared and anxious though, and I think it would help me if I understood what we are trying to do here. Could you please help me out? Could you please explain things to me until I really understand why we are making specific choices? It would really improve my quality of life if I could grasp what is going on with me.

If you put it like this, she would have to be very nasty not to answer your questions. And if she explains in a way that doesn't work for you, you can always ask: I'm sorry, could you explain that again? I don't understand exactly why we are going to....

Hope this helps a little.

Hugs

Jacqueline

[Chelee]

Adriana, I've only had TCH when first dx. Now that I've recurred this will be my 1st chemo as a stage IV'er. I have found that TM'ers for me are very reliable. For the first time they inched up in 3.5 yrs...PET/CT showed recurrence. Then I was given a loading dose of herceptin and they went down. Once Navelbine was added to Herceptin they dropped below the reference range and the PET verified a "decrease" in axilla, and liver was clear. So TM'ers seem to be very reliable for me.

I see my onc Monday & sort will thru it all. Since there is a decrease along with the fact my TMs dropped it might be worth staying on it a while longer before throwing it out as Rich said. Especially since I'm just now getting a full dose of Navelbine. Thanks for your input.


Chelee

[Chelee]

Lori, Yes your right...it is working. But obviously I was expecting too much. A complete response would of been good with me. lol (That's not asking too much is it.) :) I was happy about the liver. It was only a "low" SUV value last time...but I'm glad to see it's totally gone this time. I was depressed to see the chemo didn't work on the mets to ilium. Darn.

I'll have a better picture Monday. My TMs were down to 23 last time...lets see where they are on Monday? They use to hover at 15 to 18...so that' what I'm aiming for. (I loved your "Chemo wheel of fortune" comment.) lol I'll have to remember that one...use it when I'm down at the chemo room. I like to make ppl laugh down there...they will love that one.
-----------------------------------------------------------------------------
Rich, Your right...I don't want give up the Navelbine too soon because I might play heck getting them to use it in the future if I need it. The biggest factor with the Navy Beans is I wasn't getting the full dose because my onc wanted to be cheap and not give me the Neupogen. So I will be sticking with this for a while longer now that I'm on normal full dose of "bine" along with Neupogen. Maybe your Mother & I experienced this same dosing problem due to our insurance companies running the show versus our onc's! My pcp of 30 yrs has warned me to be as pro-active as possible when in an HMO! He has been so right.

Is your Mother still on Navy beans now? If so what schedule do they have her on...wkly? And do you know the dose she gets? I also assume she was not getting the Neupogen? Is she now?
Chelee

[Pam P]

Chelee -- I think your pet/ct report is very good response after only 2 months on navelbine. Remember 2 months is only about 2 cycles of the chemo and changes in bones mets are slow to show up on scans. Looks to me like you have good news and every reason to stay with the current treatment. Tumor markers down! Spot on liver gone. You say the SUV on liver was low 2 months ago - now gone - might not have been mets, maybe just something else the scan detected. Sclerosis is a good thing to read on a scan re: bone mets - indicates healing of the bone. I'd be very happy with this report (of course we want it to be a total cure in 2 months, but short of that i think this is good). Because of your blood counts I recall you missed some dosing during the 2 months and still have a good response.

I think staying on the current navelbine and working with your doc to find the balance in dosage & neupogen that will allow you to get the most regular treatments is the way to go.

I've been on navelbine now since Nov. (for the 2nd time). My white blood count has been low but i've been able to maintain my "3 weeks on 1 week off" schedule with the neupogen shots. My tumor markers have not come down I have a pet/ct scan coming up on 2/16 and am praying to see improvement on the report.
I hope you can have a good meeting with your doc on Monday. I know you don't often feel you get what you need from your doc, but hope you can find a way for better understanding for you and more & better explanations coming from your doc. Pam
Pam

[ElaineM]

Just wanted to say I am thinking of you and keeping my fingers crossed for you.
Have you had recent tumor marker tests? I would get those and put those results together with the scan results to see the whole picture and your overall improvement.
If you want an AI find a way to get it. I took AIs through everything I did. Sometimes doctors forgot that I was taking them. I just went along merrily getting my refills every month, because they gave me 6 refills at a time. My estrogen went down to less than half it was on AIs. There are alternatives if you can't get a conventional one, but you would have to be willing to see a naturopath or integrative medicine specialist for help on that.
In the meantime eat lots of broccoli, cauliflower and cabbage. They have a naturally occuring chemical that helps a little. You might have to continue the Zometa or take lots of calcium, magnesium and vitamin D while on AIs, because they can weaken the bones.
Good luck.

[dawn]

My onc. Switched my from femara to aromasin as soon as I was dx Stage iv and began me immediatly on ARedia. He won't do any scans until at least 12 weeks because he says it takes at least that long for anything to work. I truly trust his judgement and think he's a wonderful onc. So I'd say wait for awhile

Dawn

[schoolteacher]

Chelee,

Thinking of you. Let us know what happens with your appointment.

Amelia

[Rich66]

regarding concurrent BC hormonal and radiation..
More than I first thought.

This is pretty recent:

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045%2810%2970013-9/abstract


and then there's this


Orv Hetil. 2006 Jan 22;147(3):121-5.
[Interactions between radiation and hormonal therapy in breast cancer: simultaneous or sequential treatment]

[Article in Hungarian]
Fodor J (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Fodor%20J%22[Author]&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_RVAbstract).
Országos Onkológiai Intézet, Sugárterápiás Osztály, Budapest.
BACKGROUND: Combining radiation and hormone therapy (administration of selective estrogen receptor modulators) has become common clinical practice in recent years for receptor positive breast cancer. Little is known about a possible interaction of both treatment modalities if they are given simultaneously. Tamoxifen (antiestrogen molecule, triphenylethylene derivative) may theoretically render cancer cells less responsive to radiotherapy arresting hormone-receptor-positive cells in G0/G1 phase and increase the risk of breast and lung fibrosis stimulating the secretion of transforming growth factor beta in human fibroblasts. PURPOSE: This article reviews the published data to assess the impact of sequencing of hormonal and radiation therapy on outcomes in breast cancer. METHODS: Computerised searches for publications debating the sequencing of hormonal therapy relative to radiation therapy were done using MEDLINE data. RESULTS: Results of tamoxifen experiments with cell culture regarding radioprotection of tumour clonogens are conflicting. In contrast to in vitro results, in animal studies no protective effect of tamoxifen was observed. In one in vitro study, letrozole (non-steroid selective aromatase inhibitor) had a radiosensitizing effect on breast-cancer lines. No randomised clinical trials to date have studied sequencing of tamoxifen or other selective estrogen receptor modulators and radiotherapy. Results from retrospective clinical studies which included treatment arms with and without tamoxifen showed reduction in tumour recurrence with tamoxifen. Some of these studies have noted increased risk of lung and breast fibrosis with tamoxifen with radiotherapy. Results of three articles examined the effect of tamoxifen sequence showed no adverse effect on local control or survival in sequential versus concurrent tamoxifen and radiation patients. One of the three studies also assessed the risk of complications with respect to the timing of tamoxifen with radiotherapy. There was no difference in the rates of complications between the two groups. The association of radiation and selective aromatase inhibitors or aromatase inactivators has not been addressed in clinical studies. CONCLUSIONS: Combined application of tamoxifen and radiotherapy improves survival and local control in breast cancer. Available clinical studies do not indicate that the simultaneous application of tamoxifen and radiotherapy is disadvantageous, as was suggested by some of the in vitro studies. The risk of subcutaneous breast and lung fibrosis might be slightly increased if tamoxifen is given simultaneously with radiotherapy. Both treatment modalities should be started early after surgery. There is no sufficient evidence to withhold tamoxifen administration during irradiation of breast cancer. The issue of optimal sequencing of hormonal and radiotherapy should be addressed in randomised clinical trials.

PMID: 16515031 [PubMed - indexed for MEDLINE]

[Chelee]

My onc called this morning to tell me my TM's are up. They were down to 23 and now as of this last Monday they jumped up to 29. Still under the reference range but not what I wanted to hear. We have found TM's are very reliable for me.
My onc had me on wkly "bine" and kept reducing my dose for an entire month. Now we have been doing the every 2 wk dose that was recommended by the City of Hope onc I saw. This way it's been hitting me harder but able to control my counts without reducing the dose. So I can't help but wonder if the TM'ers jumped up because the chemo is working. I know if the chemo is working it can at times pick up dying cancer cells which show a rise in TM'ers. That happened to me once when I did TCH towards my 5th trt, then it went back down and stayed there. Hopefully I will see my TMs go down next time then I will feel better about this.

As to my bone mets I have to correct myself. My PET reports says "there is abnormal sclerosis of the left femoral head...and left ilium. Which I don't understand...it says slightly more prominent since prior exam. (The left femoral head wasn't even mentioned in my last exam...so how can it be worse.) Plus in "Impressions" it says shotty cervical lymph nodes slightly increased. The only real improvement at all was in the right axilla...it showed a slight decrease. When my onc called this morning she said she feels I should stay on this trt for now and thinks any 2nd opinion onc I go too would agree. She only called to tell me about my rising TMs because she knows how mad I would be if she didn't. So I don't know if I should stay on this 2 wk dose of Navelbine/Herceptin for a while longer or what? At least we can maintain the full dose this way with the support of Neupogen.

Chelee

[Lien]

Hi Chelee,

It sounds as if you finally got through to her. She is listening to your needs and she called you back. I don't know enough about TM's, but your view that it would be a good idea to see where they go seems a smart choice to me.

If you feel you can trust your onc's opinion, go with her suggestion. If you feel you would be happier with a 2nd opinion, please seek one. It might be a chance to check out other oncs, as you are looking for one anyway.

Let's hope the cancer cells are dying fast as we speak. I don't want no cancer cells in your body. Tell them to depart a.s.a.p! Tell them they don't want to see me when I'm angry at them! Not a pretty sight at all!

Hugs

Jacqueline

[Chelee]

Jacqueline, My onc did call me because she knows how mad I was at her the 1st time she ignored my TM'ers inching up for almost a yr. Since we know they are sensitive and work for me it is am important tool to use in my trt. I just pray this increase is really due to dying cancer cells and not that trt is not working.

I am trying to set-up an appt. at City of Hope on the 16th with my 2nd opinion onc up there to discuss this. She is the one that recommended I be on the 2 wk dose of "Bine". I have a Rad Onc appt that same day so I am hoping they can fit me in so I can see both doctors the same day since it's a long drive. Then I need to get out to see Dr. Slamon again & see what he thinks? I wish I knew for sure why my TMs jumped up? Of course I'd like to think it's due to dying cancer cells...but with this darned disease who knows.
------------------------------------------------------------------------
Rich thank you for the time it takes to dig up the links and great information for me. It's so appreciated! I've been on overload lately so it's very helpful.

Chelee

[ElaineM]

I hope you get all the appointments and answers you want. Let us know how it goes. Take good care of yourself.

[chrisy]

Jacqueline,

I like to hear you get mad at cancer cells!!!!!!

[juanita]

crossing my fingers for you!