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- - Chelee???? (https://her2support.org/vbulletin/showthread.php?t=44268)

Hang in there Chelee!! Lean on us anytime. Keeping you in my thoughts and prayers.

Glad to hear from you Chelee. Sorry for your suffering. Please know that you are in our prayers.

Chellee you are in my prayers. So glad to hear word about you good or bad. We worry about you when we don't hear.

Shela had great results from a drug to bring up her MUGA and also helped her breathing. hang in there gril

Chelee
Hoping the lung issues are improving...you are strong and a fighter...we are here for you!

Chelee, I'm sorry to hear you are not feeling well. I feel you and I share a special bond (our sick sense of humor). You know I will pray for you girl. Please keep us posted and you know if you need to vent email me..sherry

Chelee,

I hope that you are feeling better and that you get good news from your tests.

'lizbeth

I hope you're feeling better Chelee and keeping you in my thoughts. xx

Hi Chelee,

How are you doing today? Could you be having an allergic reaction to something, causing the difficulty breathing? It just occurred to me that I once had trouble breathing after being exposed to mould.

Hugs

Jacqueline

This may be totally unrelated but I too had breathing issues for over 2 months while on Chemo/herceptin/neulasta. But mine seemed to be triggered by muscle weakness in my legs. Would try to climb stairs and felt as if I had been riding bike uphill. By the time I would get to the top of my stairs or walk very far, I would be so out of breath and heart racing and my muscles were failing. They never figured out what was causing it but when I went from neulasta to neupengen, it greatly improved. Even though I am newer here, my heart goes out to you and all you are going thru at this time!

Hi Chelee?
I am so sorry that you are having lung issues. I actually had to go off the T-DM1 trial because the drug was causing lung inflammation for me which was found and monitored by CT scans with contrast. I am also the only one so far who has had this complication from this drug. I was very upset because it was working for me. It appeared as ground glass on the scans. Tykerb and Herceptin can also cause this, but fortunately so far I have not had this issue with these drugs. I highly suggest that you demand to have a CT ASAP with contrast done to rule out this side effect. My pulmonologist told me that this condition can progress very rapidly, and can be life threatening, which is why I obviously discontinued TDM1. I hope you see my message before you go to your appointment.
Thinking of you!!!
Barbara H.

Chelee,
Sorr to hear that you are having problems...sending prayers your way...hugs....also.

Jean

Chelee,

Sending more prayers and positive thoughts your way!

hugs,
shobha

Any new developments?

Thanks for all the support and feedback...I read all your posts and appreciate each one of them. My lungs are much improved...but I still have oxygen here at home. But I am able to go to my appts now without carrying a tank with me. I'm not sure at this point if the Neupogen or chemo that caused it...or a an infection in my lungs? Several of our chemo nurses are awful sick...congestion in their sinues and lungs. (Makes me wonder?) But on another note we stopped my Neupogen and lowered my dose of Navelbine this last time and so far no problems other then slight tightness in my chest? So I don't know which one caused the problem? I really wish I knew which one was responsible because that is a very tolerable chemo combo I would like to keep using if need be.

I am currently going to a different cancer center for radiation to my right femur. I am to do ten days of rads & Monday will be day five. So far it's not been too bad except feeling tired. I had no pain in the hip once I recovered from my femur surgery. The leg finally felt great! I was walking without my cane and feeling pretty darned good. But now after only 4 days of rads to my femur I've noticed my hip and one place of my pelvis hurts. Also the arch of my foot is killing me when I walk. I don't know if all this is normal but I will be discussing this with the Rads Onc tomorrow before we start again. I was told radiation gets rid of pain...not causes it?

I did have a CT of chest, abdomen and pelvis along with a bone scan. Results of both were good. (Thank goodness.) Nothing new showed up. I was relieved to say the least. My onc wants to stop my Navelbine and save it since scans are stable...but another 2nd opinion breast specialist I went too said he would keep me on this combo for another 2 months. The City of Hope onc told me she would keep me on this for four months...so I guess it's up to me to decide. I'm kind of scared to be on only Herceptin at this point...not sure what do to?

Chelee

If it's any help, when I consulted at Dana Farber, it was recommended that I stay on the chemo with Herceptin at least 4 months, preferably 6 months before going with Herceptin alone. At the time I had just started Gemzar, which is not working and I just started Navelbine on Friday.

Sorry, you are having to deal with all of this extra crap. I hope it turns around for you asap!!

I'll be thinking of you!!

Darlene

Thanks for updating us Chelee. I am so glad you have started to feel a little better. I would go with a little more Navelbine just in case there are some microscopic cancer cells hanging around. You might be able to ask for a little lower dose to help avoid some of the problems you had.
Good health to you and the chemo nurses !! I hope you all continue to improve. Take care.

Hmmm. I guess there's the saving the chemo concept vs the stopping allowing the cancer to regroup. Granted, the Herceptin might hold things. Would you be able to get a PET before deciding to stop the 'bine? Would you be continuing Zometa? Instead of relying totally on Herceptin, do you think your onc would consider something metronomic like Cytoxan or Endocrine therapy?

Darlene, Yes that does help. The breast specialist I went too suggested two more months which would total 6 months if I was to continue. So it seems the bc specialist I went too and Dana Farber are on the same page.

Elaine, Thanks so much for your opinion also. I did well on the lowered dose of "bine" this last time so I think I will at least stick to that for a couple more months. I am not comfortable stopping this soon--so thanks girls.

Chelee

thanks for the update Chelee, hope everything continues to improve and you are able to get out and enjoy some spring weather :)

Hi Chelee,

It's wonderful to hear from you , and even more wonderful to hear the good news. Lungs better, pain in hip much less, scans clean... Those are major things and I am doing my Happy Dutch Clog Dance for you.

I understand why you would be worried about the pain in your leg increasing and about the cause of your symptoms. That's only natural when your body has recently "betrayed" you and you don't really trust your onc. You will have to adjust to that and that takes time. However, it seems that you have a good medical team now (with the second opinions and all of us to chime in) and that you are doing better, feeling better. So you seem to be on the right track. My best friend is a dermatologist, and she once told me that quite often they don't know what works best and why for whom. So they practice trial an error, because it's all they've got.

The pain in your leg could be caused by the rads. Initially rads cause inflammation, so that could be the culprit. Ask your rads onc. or nurse.

Now about the duration of chemo: I think it would be wise to continue a bit longer. You seem to tolerate the lower dose well. But I"m no doctor, so perhaps you could ask the doc the reason why she wants you to stop, and the pro's and cons for both decisions?

Hugs

Jacqueline