Progression Again! - I'm Heading to Johns Hopkins

Kim_888

Hello Everyone,

Its been some time since I posted, but today I just need to vent.

I've been on chemo now for almost two years after my breast cancer recurred from 2001, with mets to bones (sternum, + L/R axilla).    I also have a history of Hodgkin's Disease in 1988, so many chemo drugs are off limits as well as radiation.  

For the breast cancer, so far I've been on:

1. Dec.07-Oct.08 - Xeloda, Avastin, Zometa  + Neulasta  ( progression began again in Sept. '08 and hand/foot syndrome was acute)
2. Oct.08- Mar. 09 - Navelbine, Zometa and Neulasta (didn't tolerate Navelbine well, developed neutropenic sepsis, and progression again in March)
3. Apri. 09 - Sept. 09 - Taxotere weekly/Zometa monthly.  I had great scans in July showing significant improvement.  Yet, since those scans on 7/7, my pain has increased along with swelling.  A CT in August again showed no change since the 7/7 scans.  However, my pain is escalating and the swelling is severe on my left side at the mastecomy sight, sternum, etc.

 Today, the look on my oncologist's face when he examined me, was alarming.  He now agrees with me that the Taxotere is not working.  Hell, I don't need an MD behind my name to know my body. I was complaining about this since the end of July.  So, today I started with Doxil and will try this for the next four months. 

Needless to say, I'm getting scared, worried and very disheartened.  I made an appointment at John Hopkin's Comprehensive Cancer Center in Baltimore, MD for Friday, October 2nd.   Hopefully, they will have a better suggestion for therapy, clinical trials or something.  UPenn (Phila),  Sloan Kettering(NYC) and Fox Chase Cancer Center(Phila) all left me feeling dissatisfied with the treatment approach which is why I opted for my private onco.

 I'd appreciate any input on Johns Hopkins.  My research has shown that they received a #1 rating in patient satisfaction, so that's a plus, because I'm losing faith in my oncologist.  I don't expect docs to be miracle workers, but I think its time to find an oncologist who is going to take a more proactive approach with my case.  

That's all. Like I said, I just wanted to vent.   Any feedback, input, suggestions, etc would be appreciated.  Keep fighting!!!

Thanks for taking the time to read my post. 

LRM216

Has anyone suggested the Parp Inhibitor.  I know it's still in trial, but it is for those triple negs with progression.  Good luck and God bless.  I am thinking of you and wishing you much success.

Linda

Kim_888

Well, I just had the BRAC testing done, and I'm negative for the genes.  Because this is not a hereditary cancer, Olaparib is out.  I'm not sure about any other PARP inhibitors.  My doc hasn't mentioned them.  In fact, I'm always the one bringing ideas forth and feel it should be the other way around.   Thank you very much for your kind words!  I wish you well, too.

Jennyi1

I would just like to wish you well and to let you know that you are in my prayers. I hope that you get everything and more from John Hopkins Cancer Center.

  Jenny

Kim_888

Thank you Jenny!  I appreciate your kind words.    Do you have any experience with Johns Hopkins Cancer Center?

tibet

Kim

John Hopkins is a good center. Hope you get the care you need.

I read you were first dx in 01. Usually for TN, after 4 or 5 yrs out, recurrence rate is really low like 0.2% I heard. What does your onc say? Love to you. 

PS73

Kim,

John Hopkins is a fantastic center. I had my third opinion there. Had I lived closer to MD I would have definitely gone there hands down over the ny metro area.

I wish you luck!

Kim_888

My onc doesn't say too much about it, other than its very unfortunate.  I started to manifest pain in my chest in April '07, but who knows how long the recurrence was there?  It could have been months before for all I know.  I didn't get a firm diagnosis of recurrence with mets until the Fall of 2007.

I guess I'll never know why it came back, but I am firm believer that stress can wreak havoc on the body.   For 3 years prior to my rediagnosis, I was caring for my father who was dying of heart disease.   Running 180 miles roundtrip every weekend to do his pills, doc appts, injuries, etc., took its toll.  We went through major open heart surgery for the second time, a broken hip, a terrible marriage between he and my mom and a whole lot more. That last year of his life was the most difficult. There were times I thought I was heading for a nervous breakdown.   I'm just glad he died not knowing my BC returned.  He may have tried to hang on and that would not have been good.   It was a heartbreaking time period, so who knows?  Maybe all the adrenalin rushing around in my body, along with sleepless, worriment, and a new marriage, probably contributed to a breakdown in my immune system which enabled this cancer to return.    That's my best guess. 

Right now, I'm more concerned with getting rid of it again, than pondering why it returned.   I will never willingly give up and try to keep the best outlook I can, but this time around I think it has me pretty good.   

Let's see if JH can get me on the right path.

Thank you very much for your note and your kind words.   I will update everyone on Friday after my visit.  Take care,

Kim

Kim_888

Thanks PS73!  I appreciate the feedback.  Best of luck to you, too!

Nanalinda

Have you tried Gemzar?  Taxol/Avastin failed me after 10 months.  I have been on Gemzar now for 3 months and it is a much easier chemo with few side effects.  I do have some fatigue, and after two weekly tx, I have to take the 3rd week off d/t plt depletion, but they bounce right back after the week off.  I also had to start Neupogen for the WBC's.  I am triple neg like you, and I also have a basal tumor which makes it even more aggressive:  my mets are throughout my neck, chest and spine.  I have one near my clavicle that I can feel, and it was the size of a golf ball when we started Gemzar.  After only two tx, I could no longer feel it and it has stayed down for the 3 months I have been on Gemzar.  My onc has ordered a scan so we can see what is going on inside, and I feel confident it will be a good scan.  Good luck to you in whatever tx you end up on.  I hope you can fin an onc you feel comfortable with.  Linda

Jennyi1

 I'm sorry, no, I don't have personal experience with John Hopkins center, but I have heard that it is top rate. Good luck and lots of love and prayers to you and yours.

Jenny

mizb

Hi Kim - I was treated at JH and they are great! I can't say enough about their "team" approach and the attentiveness of everyone that is involved with me.

Johns Hopkins is a very special place.

I wish you all the best.

- b

Kim_888

Thanks everyone for the well wishes!  I'm excited about my visit tomorrow.

Nanalinda, no Gemzar has not been in the mix yet.   I'm only getting approximately 3 mos out of these drugs before they seem to not work.   So far, I was on Xeloda/Avastin (8 months), Navelbine (4months), Taxotere(6 months, but I think it stopped working in July).  Now, Doxil.   I tolerated the taxotere pretty well, but not the Navelbine.   

Perhaps JH will recommend Gemzar.  

I'll keep you posted!

Thanks,

Kim

hope123108

Wondering how your vist to JH went?  Please share your experinece if you would as I have considered going there myself.  Also triple-neg and from the PA. area.  I went to Fox Chase and was not all that impressed. Look forward to hearing some good news from you.

Stay in touch!