Need some help...

[Chelee]

I've been going through a rough time due to a problem I've ran into with my lungs. I have compromised lung function to begin with. Not long ago my onc made an error with Navelbine/Herceptin and it really set me back. I've been on oxygen for 3 months now. I'm now able to function mostly without it unless I have to walk too far. This has excluded me from the T-DM1 trial since I'm on oxygen. :(

My last PET/CT shows progression/uptake in both hips and pelvis. I need to start chemo. CA27.29 still going up...I have to get started which worries me since my lungs aren't fully recovered. I have been holding off chemo for too long but have to do something now. Currently I'm only on Herceptin/Zometa/Femara. Any idea's/thoughts on which chemo I could try at a lower dose that might not be so harsh on my lungs...yet still stop the progression with bone mets?

Chelee

[mmoons]

Chelee-

I do not have any advice to offer. There are so many brilliant woman here...someone will have advice for you.

I am so sorry for your struggles. I am lifting you up in prayer and sending you hugs.

Maureen

[Jackie07]

Chelee,

It takes a while to see the result of a new drug (combo) Novelbine is originally invented for lung cancer. Perhaps the improvement you see right now is due to the late effect of the medicine. http://en.wikipedia.org/wiki/C45H54N4O8

Now the main focus needs to be back to the bone mets. I'll look it up and then post. Take care.

[Rich66]

If you need to switch and have to wing it with something low toxicity, could try Herceptin+Xeloda+Cytoxan+Tamoxifen or Faslodex+Zometa. Regular or metronomic dosing.

[Chelee]

Thanks Rich. That's more the idea I'm looking for until things improve some. I feel much better now, but sure hate the thought of starting up a new chemo/targeted therapy. I wish the FDA would approve T-DM1 so I could have that at a reduced dose...I'm sure that would give my bone mets a run for their money. After the Navelbine incident my CA27.29 did drop...but just got word they are rising again so I'd like to get started on something?

Jackie I'm sorry for the confusion. I was trying to save ppl from reading a novel and didn't make myself very clear. Navelbine works well for me, but my onc was suppose to start me off on a low dose. Instead she gave me a standard two wk dose of Navelbine, and far too much Herceptin which had very serious consequences for me. Any other idea's of drugs that might not affect my lungs as bad I would appreciate it. I realize there are no guarantees. But I have to do something soon.

Chelee

[Ellie F]

Happened to get an 'education' about xeloda yesterday by chance. It has a low toxicity profile and may be good for your lung issue.

Ellie

[ElaineM]

I am sorry you are having a rough time.
Have you considered Tykerb with a chemo?
The reason I mentioned Tykerb is that the dose can be adjusted on a daily basis if you are having alot of problems.
If you can't take Navelbine and Herceptin maybe Abraxane (usually less side effects than Taxol) or Xeloda (a daily dose adjustment might be possible)would help?
Some of our members are taking Halaven which seems to be effective for them, but I don't know how that affects the lungs.
There is a drug that is being used by some bc patients called Metforam. I am not sure of the spelling, but it was developed for diabeties. I think recent testing showed promise for her2 positive estrogen positive breast cancer.
I wonder if some of the older chemos would work too?
I wonder if adding calcium, vitamin D and magnesium to the Zometa would help?
I am just throwing some things to think about out there.
In the meantim take good care of yourself. I have my fingers crossed for you too.

[StephN]

Dear Chelee -

Very sorry to hear that your lungs are not recovering faster from the Navelbine problem.

Have you considered seeing a radiation oncologist to discuss having those spots in your bones radiated? This would knock back the cancer and not expose you to hard chemos.

I am surprised if your regular doctor did not mention this possibility.

[tricia keegan]

Chelee I was wondering the same as Steph about the bone mets???

Sending good thoughts for you!

[krisvell]

Chelee;
Wish I had some advice to offer you. Please know I am rooting and praying for you that you will find the right treatment.
Hugs,

Kris....

[Laurel]

Chelee,

I have no further advise, but wanted to say that you are a wonderful inspiration to us all and that you simply must find a regime that gets you back to NED! I am so upset to hear you have been struggling so with your treatment. I know we can react to drugs strongly at times and dosing can be problematic for one and not another. Sending you love and prayers for something that is gentle for you and effective! Please keep us posted, Chelee. Love you.

[Chelee]

Today I had an appt. with a 2nd opinion onc about this problem. Which just shows more proof of what a well informed and educated bunch of people we have on this board. :) This onc said adding Xeloda to Herceptin would be a good choice without lung issues. It was also mentioned to add Tykerb/Xeloda both to Herceptin. Abraxane was another choice to consider. So Elaine and Ellie you guys get an A+. I also remember last yr I went out to see Dr. Mortimer at City of Hope & she suggested Xeloda since I was concerned about my lungs. Also mentioned was Herceptin/Faslodex since I am highly ER pos.

Steph my onc did mention radiation but she thought I was going to enroll into the T-DM1 trial so it was never brought up again? I've had rads to RT femur two yrs ago..not sure if I can hit it again or not? But my left femur and ilium hasn't had any rads. That's a question I will ask my Ortho onc at upcoming appt.? It would be nice if I could just hit those spots for now and avoid chemo as long as possible. (I've had one stubborn axilla node that Femara/Herceptin has taken care of thankfully.) Last CA27.29 was up to 45.1 which isn't terrible...but high for me. Want to bring that down quickly. Thanks so much to all of you! Some times I just feel so over whelmed when it comes to decisions like this? Can't thank you enough!

Chelee

[Rich66]

So the (disturbing) Navelbine/Herceptin dosage blunder may account for the recent lung issue. But you also had lung damage from Taxotere during adjuvant, right? Just painting the bigger lung sensitivity picture. I know it's only one anecodotal, but..I do know of a patient in her 40's who had Abraxane weekly and had to eventually stop due to pleural effusions...although it did knock things back in her liver.
If it's all bone mets..if Zometa isn't doing it, maybe Denosumab(Prolia)?

[michka]

Chelee. I am also upset you have to go through this lung problem. You had enough. I hope you will build your plan quickly with your oncs and get back on track to healing. Having to let go of your treatment because of bad side effects (from a mistake?) and not having yet defined a new one is a difficult period on top of the physical problems. But the "brains" here and your oncs seem to have several options to offer. I am sending hugs. Michka

[KDR]

Chelee,
Speedy recovery! Hugs,
Karen

[chrisy]

Oh, I was too late...but was also in the camp noticing you had not had tykerb/xeloda - and agree that this plus herceptin could be a really good option.

The radiation thought is an interesting one as well provided you are fairly sure you are dealing "only" with the couple of bone mets.

Good luck, Chelee - there are lots of options.

[Ceesun]

Chelee, Wondering about the herceptin-tykerb combo for you? Any thoughts? Ceesun

[Joan M]

Chelee,

I hope you'll be feeling better soon, and I'm glad that you're mostly off the oxygen.

Joan

[Pam P]

Chelee - I am sorry to hear of everything you are dealing with - you've had too much going on. I sounds like adding xeloda might be the key for you. I'm praying which ever path you decide to take that it will be gentle on you and effective on those bone mets. May the lungs heal soon too. You are so strong -- keep going, keep having faith in your ability to get through this hurdle. Pam

[Sheila]

Chelee
Another vote for the Tykerb/Xeloda with the Herceptin....another option might be metronomic chemo for a short time....I know you are on top of things, for yourself and many of us here....always keeping you in my thoughts and prayers!

[Chelee]

Lastest update. If anyone has some thoughts on this I welcome them! I finally saw my Ortho oncologist. The MRI I had of hips and pelvis (iliac crest) show a mass on left hip which has increased in size since last MRI. Iliac crest shows progression also. The mass on left hip is on the femoral head which concerns me, but Ortho onc said he doesn't think it will fracture? Now that he's seen the MRI he strongly suggest radiation to left hip and iliac crest. :(

This Monday I see my onc and haven't decided which chemo combo/targeted therapy to start on? Lungs just now feeling almost normal again so I hate the thought of this. I'm thinking I'll try the Xeloda/Herceptin first--and maybe add in Tykerb if all goes well?

Or now that I have to do radiation I could temporarly do Herceptin/Faslodex/Zometa till I get thru rads? (And switch Zometa to Denosumab?) Maybe it works better on bone mets? But I'm not sure if adding just the Faslodex will be enough for the bone mets? I was trying to make this easier on me while getting rads done first. I hate making decisions like this.

Chelee

[Pam P]

Chelee - I think while you do radiation you won't be able to be on chemo so maybe just herceptin and zometa for until rads are done. Do you know how many? I'm sorry you have to add this to your routine now too and hope the rads will take care of all the hip issues for you. Stay strong you are one amazing woman. Pam

[Chelee]

Hi Pam,
I see my onc tomorrow and was going to ask about the chemo/rads issue? I have no idea if I can do both at the same time? I think with some chemo's you can? When I was doing Navelbine one time they let me do rads to right hip. I just don't know?

I haven't seen a Radiation onc yet but plan too soon. I have no idea of how many times they will want to zap these spots? When I had the mass removed from RT hip in Nov. 09 they had me do 10 days to that hip. I've always wondered why only 10? My Rt hip is still showing uptake..so not sure how much rads does at times? If I remember right you had 15 to each femur? Did that destroy the cancer for you? How are you doing now?

I sure wish the mass on left side wasn't on the head of my femur. Seems like a bad spot to radiate. I just don't know what to do? I hate this decision making. Thanks Pam!

Chelee

[ElaineM]

Hi Chelee,
I came across a July post from you about yor hip. I hope your hip and everything else has improved. We hope to hear from you soon. Take care. Blessings of peace and good health to you always.