Jillt

CalGal,   

Take the trip and go as long as you want to. Give yourself a vacation from cancer.  At this point we can't predict our opportunities.  Right now I have time, but I am so wiped out that I would rather stay home and sleep.  Go for it!

Jill

I am going in for a CT scan today.  I don't really want to. I have been avoiding my doctor at home and chemo for two months now. I am so sick of doing all this chemo that never works(for me).

I am out at NIH so I will also be talking to them about some clinical trials.  It seems like most on these boards are eagar to move on to the next treatment if their current treatment stops working.  I just can't get psyched up for more chemo.....I'm tired.

Here's hoping that my mets haven't spread or grown too much.

Jill

A few minutes after we got home from my CT scan my oncologist called. I knew there was trouble if he was calling himself.  He told me that they found a blood clot in my lung. Geez what the heck...what's the next problem going be?

I have been having pain behind my left knee, so they think the original clot is there. Yesterday I noticed that my left foot was swollen.I'm thinking I am geting lymphedema and cursing that.  I am having an ultrasound on Wed so they can confirm where the original clot is located.  The treatment is to put me on blood thinners.  I will be giving myself injections twice a day until the pills they put me on kick in.  I guess it's a good thing that I had a CT scan scheduled before I had a pulmonary embolism.

the jury is still out on the transplant.  Now that I am off the steroids and trying chemos that i did not respond to before we will find out.

I don't recommend the transplant....it has been brutal.

Kari,  i'm having the same problem with my gemzar. i'm in the hospital with a fever and very low counts.   hang in there...we can do this.

jill

I don't have a treatment plan yet. I am tapering off steroids, so we may wait until the end of the month or early Feb to start chemo.  We may try Gemzar and Navelbine.  I have had this combo before and it did not work, but with the transplant I may get a different response. I have not had any positive response from chemo yet.  I don't think I would be eligible for a parp inhibitor trial now since I'm still on a trial.   I am BRCA 1 and triple negative.  

I didn't even think to ask if we should biopsy the liver spots. I didn't even take a copy of the report.  I see the doc again next week.  I think my reports should be available on-line later today.  I guess I'm kind of in shock.  

Hey - I am doing ok.  I know I am way behind posting on the caringbridge site.  I have been trying to decide if I should go back to my Google blog instead.  I have been back at work about 30 hours a week.  A lot of work people followed my Caringbridge posts - but now that I'm back at work it seems strange to post my medical info for my employer to potentially see.

All is not well in my cancer world. My tumors are showing growth (they still call me stable because the growth is small).  I'm going to start chemo again at the end of the month.   I do get scanned again tomorrow, so we will see how that looks.  I see my local doc on Monday.  I have lots of questions for him.  I feel like my breathing isn't right .....it could be from the pneumonia or maybe it's the lung mets that are growing.  

There are two types of stem cell transplants.  An autologous transplant uses your own stem cells and is really just a way of getting a very high dose chemo treatment.   A allogenic transplant uses a donor with the goal that there will be a safe level of rejection going on between you and your donor that will actually fight the cancer.   With breast cancer it has not been proven to extend life.  I did have a allogenic transplant through a trial at NIH.  I did this because my tumors continued to grow through all the chemos that I tried.  My tumors have done some shrinking since by transplant  on8/28 and I hae not had any progression elsewhere.  I don't think I will end up NED as a result of the transplant alone.  It is likely that I will need more chemo and hopefully my new immune system (from my brother) will respond to the chemo.

I decided to go with the allegenic transplant because I could not find a chemo to work on my mets.   I am triple negative and BRCA 1+.   A donor transplant does come with major side effects  - some which will be permanent.     My local doc thought that a transplant was a good option for me.  The transplant team at NIH has been very good.  Dr. Michael Bishop is the Principal Invesigator.   We are just starting the planning/transition for sending me home.  I can't comment yet on how that care is going to be coordinated, but it sounds like they will have regular contact with my doc.

Alimta is a drug that they have been using for lung cancer.  I did a clinical trial search and it looks like they are now combining it with other drugs in phase II trials for breast cancer.  It sounds like it works like a Taxane.