Re: Update on Barb
 

Were not sure where to go from here the removal of fluid has made Barb more comfortable but she has started to run a slight fever again today. She had her third TDM=1 treatment Tuesday and we have a CT scan scheduled for the 26th. Its my understanding that cat scans arent recommended soon after a chemo treatment. So Im not sure what to do, is the fever a TDM-1 side effect, a pneumonia after effect, or more likely a sign of infection somewhere.Her skin mets are very ugly at this point, actually open sores. Could this cause the fever or if there are mets to the liver would that cause a fever. Shes never had a sign of activity in the liver before. I plan to get her in to see the doctor first thing tomorrow AM.

Re: Update on Barb
 

Mike,

So sorry for all your troubles, and Barb's. I'm glad she's breathing more comfortably. I'd echo the thinking that skin mets that aren't spreading seem like a good sign.

I pray for healing, wholeness, joy and light for you and Barb.

Re: Update on Barb
 

fever is normal reaction to t dm-1, w/in 2-5 days after tx. after several txs, sometimes more , fever may go away, as body adjusts to the drug. we had to go to ER ( access rules ) if temp went over 100.5 Most often turned out to be usual t dm-1 reaction. one time fever went high 103 , stayed high, we didnt want to go to er on wkend, turned out to be sepsis, which is very serious. so now we tell everyone dont wait , follow the rules.
Or could be pneumonia coming back , can be hard to kick when overall strength is down. in my laymans opinion, going to your doc tom. is a must.
fever is not necessarily indication of liver mets , or any mets for that matter . the scans on the 26th will tell . they will be compared to last scans before t dm-1 . has your doc worked w/ t dm-1 before ? most t dm-1 docs would give it at least 3 doses and ct's before thinking about switching tx's. Hang in !

Re: Update on Barb
 

What about tumor markers ( blood tests ) ? were they done before tdm-1 started ? done since ? they could give indication if t dm-1 is working internally, while waiting for ct pictures.

Re: Update on Barb
 

Phil

Yes blood work was done before treatment but there wasnt a scan done immediately before, there comparing to one done in May. Her Onco has felt that in her case scans arent needed as often. She hasnt had any surgery because he felt you remove to prevent spread. And she had already spread to her spine at diagnoses. He felt we could see the effectiveness of whichever treatment she was on by looking at her breasts. Scans were done before each change in treatment prior to TDM=1

Re: Update on Barb
 

Surgery is more and more ' old school " in tx. L. had just a lumpectomy. we chafe against the rules in trials , and they often are not flexible enough, but there is benefit to rules. When admitted to exp access L. had ct's done. just before first dose. then ct's were done by rule after dose 3. and every 3 months after, for over a year . this yr ( second yr anniv. of t dm-1 is coming end of Nov. ) we scaled back to every 4 months.
tumor markers done just before first dose, then again, I believe after first dose , or second, before ct's.
you are fighting a complicated battle, w/ pneumonia, skin mets, praying for t dm-1's effectiveness, it does take awhile. praying for good results on 10/26 !

Re: Update on Barb
 

Hi Mike ! I found an old post on skin mets. Hopefully the scan will show good results ! ( My skin mets never showed up on the PET scan. )
http://her2support.org/vbulletin/showthread.php?t=46094

Re: Update on Barb
 

Just returned from Barbs Dr. hes taking her off TDM-1 and starting Haloven next Tuesday. She has progressed considerably while on TDM-1 theres a mass at the base of her neck that has done nothing but grow so bye bye TDM-1. She also started radiation today on the skin mets and the mass on her neck. Her neck has really been bothering her so I pray Haloven does the trick. I wish I understood why we have to go through what weve been through.We fought long and hard for the TDM-1 twice now, once to be randomized to Tykerd on Emelia and now we get compassionate access and it does nothing. I think her doctor is as upset about this as we are he really seems to care for Barb and that makes us feel like we are where God would have us to be. Hes sure not wasting any time we were scheduled for Cat scans on the 26th and treatmant on the 30th. He feels like theres no point in a scan when you can obviously see progression and he marched us straight across the hall to the radiation dept and told them to work her in today for treatment. Just wanted to let you all know where were at in this crazy journey.

Re: Update on Barb
 

Praying hard for Barb, Mike. This radiation/Haloven combo is the winner. I look forward to reading your posts about her improvements.

You are both warriors and I am lifting you both up in prayer daily.

Maureen

Re: Update on Barb
 

I am so so sad to hear this update. You fought so hard to get T-DM1 and it is so difficult for me to understand why it didn't work. Barb has not received much chemo in her journey compared to so many others so it can't be that. Just as an FYI, my recurrences have both been in the neck nodes and a mass in the right supraclavical area. If I didn't get T-DM1 (which he recommended as first choice), Dr Slamon recommended TCH for me. I didn't want TCH because it is harsh but it may end up that way if T-DM1 doesn't work for me either. I will have to decide if I will do that given my weakened state of health.

I pray halogen works for Barb. You two deserve a break.

Re: Update on Barb
 

Mike,

I'm sorry for these setbacks. It's very disappointing. We all have such high hopes for TDM-1.

It's wonderful that Barb's oncologist is so proactive. I pray that the radiation and drug combination will get her cancer under control.

Re: Update on Barb
 

Mike
I am sorry to hear of this let down. Perhaps your new path will be the right one for Barb. It's awesome how you are such a champ for her. There are many other options, don't feel discouraged. I will keep you in my best thoughts.
Karen

Re: Update on Barb
 

I'm sorry to hear about Barb's progression with TDM-1. I've been following your updates with hope and this is disappointing for me too:(

I was wondering if you've explored Perjeta/Herceptin and Taxol combo. There's this thread on BCO where the ladies have had good results with this. Hopefully this will reverse the Herceptin resistance. Not sure if I'm breaking any rules by posting the thread here, but I'll just post it for your ease of reference.

http://community.breastcancer.org/forum/8/topic/790575

Of course, I've my fingers crossed that Halaven does a good job and you won't have to explore the Perjeta combo..

Re: Update on Barb
 

Barb was in so much pain yesterday that they werent able to effectively map out the entire radiation treatment area. We left their office around 2:00 right after the CT Scan and we were told to return around 4:30 to begin the process of maping and radiation. When we returned as instucted they werent done with the calculations so we waited a while maybe 1/2 hour. When they put her on the table and started positoning her she wasnt able to comfortably cooperate. They tried several times but gave up at 5:45 and suggested retuning at 12;; today but this time make sure she was heavily medicated, her onco prescribed some pain pills yesterday. I find it amazing how God works when I awoke this morning its as if he spoke to me in a dream and said why are you putting her through so much pain trying to treat everything at once. Concentrate on the mass in her shoulder and we will worry about the mets down the road. So I called the doctors office and suggested just that. When we met the doctor at 12:00 he came into the room and told my wife that he thought that my idea was a good one so they set it up to map and treat the one area and she did well enough to accomplish that. Hopefully now the treatments will reduce the pressure and allow future treatments of the mets.

Re: Update on Barb
 

You are a wise man. My current reoccurrence was finally detected on Pet when I started to have tingling in my fingers which proceeded with severe pain up my right arm and then my rt shoulder and back. I lived in bed.On an ice pack and pain meds for weeks before the scan revealed a 3 cm tumor in my rt supraclavical which was pressing on the branchial plexus. I couldn't eat and lost a lot of weight. i got a new appreciation for the pain so
many patients try to live with. I begged for radiation to start ASAP. I had 19 rads. The pain discomfort I have now is only in my rt hand. They tell me it will take a long time for these small nerves to regenerate and they may never regenerate. After radiation they made me wait at least 6 wks for chemo which was fine because I was busy trying to get T-DM1. Barb has to get the pain under control to fight onward with chemo.

Re: Update on Barb
 

Her Onco has a Haloven treatment scheduled for Tuesday the 23rd provided ins approves. Is it a bad idea to do this so soon after and during radiation . She will have radiation treatments Monday thru Friday for the next couple weeks at least. Originally we were told Rads for 5 weeks but that was when they were planning on doing the mets and the neck. Our only experience with radiation was back in Aug of 2010 when they zapped the met to her spine when she was diagnosed. Her Onco started chemo the next week so I have no doubt hes aggressive which I guess is a good thing.

Re: Update on Barb
 

Got home late from the hospital last night and saw your post, going after that neck area makes sense. Radiation definitely works on certain areas , often never comes back in those areas. Halaven works well for many, and is a recent drug., appr. only in 2010. We are Praying Hard for you and Barb, Praying for good results from these aggressive tx's. T DM-1 should be available , if needed , as an extra kick, by next Feb. or sooner . Merciful God , Healing God, Be With Mike , Barb, and Family. Psalm 57 : 1 , " Have Mercy on Me O God...I will take Refuge In The Shadow Of Your Wings until the disaster has Passed ". And Lorraine always adds " No Peeking ! "

Re: Update on Barb
 

Hoping and praying the txs control Barb's pain. Please know that your family is in my prayers. peace

Re: Update on Barb
 

Praying for and thinking of you guys.

Paula

Re: Update on Barb
 

Mike,
Stay strong. I believe you are always exactly where God wants you...if you're there because you love, and trust. I think you and Barb have those two things covered!!

Prayers and good wishes going out to you both...I'll be taking you with me, in my heart, to church this morning.
Denise