Progression, starting TDM1
 

Was in the ER on Saturday morning because I spiked a 102.5 fever. Seven hours, 3L of fluids, IV anbx, radiograph of my chest and ultimately a chest CT and we had a Dx of pneumonia. However, the ER doctor noted that I had spinal mets. I told him I was aware and he was relieved.

Oncologist was concerned as T10-11 looked more advanced than previous. He ordered a Bone scan to see if anything else turned up since the field was limited to my thorax. Bone scan turned up right 8th rib so definite difference from any previous scans CT/MRI/PET in the last three months. Inconclusive without a PET but ominous. Trying to get permission from insurance for PET, last time it was like pulling teeth. In the meantime, we're forming a plan. Since we can see that THP isn't working just based on the increase in size in T10-11 mets, we're going on the assumption that something different needs to happen.

I was due for chemo today but declined it. Next week I will start Kadcyla. I haven't followed any of the discussion of those who have been on it because I never thought I would need it. Who does? I know it's newly out of trial so experiences and long term effects are probably limited but I would love to hear anything you have to offer about what to expect.

I'm so sad, I lost all my hair for absolutely no gain but I will start growing it back right away! That makes me super happy.

Re: Progression, starting TDM1
 

Ugh. That is tough. Kadcyla (TDM-1) is a game changer for some mets gals. Yes, current therapy isn't really working and good for your onc to recognize this.

I just started on Kadcyla on Friday and so far it wasn't too bad. I am planning on icing my hands and feet to prevent long-term peripheral issues, plus taking UBQH (Co-Q10) through my naturopath which protect the heart muscle from damage.


On the Inspire.com site I learned that Papaya Leaf tea has been noted to improve platelet counts by patients. I picked up some at the herbal store the other day.

The other concern is that it, over time, is hard on the liver. I was told that they will let the liver enzymes rise pretty high before stopping treatment with it. I know from my research that magnesium is super important to liver detox ability (RBC Magnesium is the more definitive test to do) and also that qigong is good for improving my Liver Qi which has tended to stagnate. Controlling inflammation is also important for the liver as it is an organ heavily involved in how our bodies use insulin. I'm on a ketogenic diet which also is very low carb and low inflammation so I think I have that covered too. My naturopathic oncologist will be tracking my blood labs quarterly to try to catch any imbalances when they start.

I hope it works out really well for you and we can get you to NED. Now watch this video:

Lorraine's video for TDM-1 (Kadcyla) access:
http://youtu.be/AkQOLGpXf98

Re: Progression, starting TDM1
 

Tracy,

I'm so sorry to read this. Your ability to find the positive (being able to have your hair grow back) speaks volumes about you. You are amazing!!! I'm sure that you must feel pretty bad dealing with pneumonia and knowing that your body doesn't seem to be responding to the current treatment. As you know, their are many treatments for our disease so my sincere hope is the next treatment does the trick for you and gets you back taking those hikes in the woods.

I'm keeping you in my thoughts and prayers.

Take care,
Brenda

Re: Progression, starting TDM1
 

If nothing else, I'm glad that you found out the treatment isn't working so that you can move on to a new treatment plan. I'm just so sorry that you're going through this. We're all praying and pulling for you.

Re: Progression, starting TDM1
 

Tracy, I don't have any expertise to add, but I just wanted you to know I think about and pray for you every day. I'm sorry about the pneumonia, but glad you are starting a new therapy, I have read many good things about Kadcyla.

And YAY for knowing your hair will start to grow back!

Carol Ann

Re: Progression, starting TDM1
 

I was on kadcyla for 5 months and the biggest side effect for me was low platelets. My doctor wasn't willing to cut the dosage at first then I progressed so we just moved on to something else.

You don't lose any hair on kadcyla. But if you are still working, you may want to reconsider it. Because of low platelet, I'm talking about number being in the low 40s, you can easily have a nose bleed that won't stop easily; if you still menstruate, you may pass large blood blots which is no fun when you are shopping or outside your home.

However you may not have such bad side effects as they seem more common in Asian women according to some research. Good luck with your treatment!

Re: Progression, starting TDM1
 

Aw Tracy - sorry to hear that there was progression but at least it was relatively early in the treatment plan. I hate this disease. Keep your chin up - there are so many new treatments and drug combinations being released that you will find the one that works for you.

Janis

Re: Progression, starting TDM1
 

Hello Dear Tracy!! I have not visited this board for soooo long...saw your post...want you to know I'm sending you HUGE HUGS and PRAYING FOR YOU!!!

Re: Progression, starting TDM1
 

Praying for you Tracy!

Re: Progression, starting TDM1
 

Please keep us updated. SO SORRY you are having to go through this. We really need a cure, not a treatment program that's just a band aid cover for the problem. Will be finished Jan 4th, for my lung met.

Re: Progression, starting TDM1
 

Good news! Active areas seen on the bone scan last week were not evident as metabolically active on the PET scan, the activity on the bone scan is supportive of healing lesions so even if the "new spot" on my rib is a met that was too small to show up on my last PET, it is responding to treatment and healing. Given that we are seeing good response, we decided not to change the chemo protocol. It's working, we'll use it until either, I cannot tolerate it anymore or it stops working. When that happens we have many options and will visit them at that time. I couldn't be more pleased with today's report. I went from fearing progression to seeing a glimmer of actual remission in my future.

Re: Progression, starting TDM1
 

yea- happy dance !!!!

Re: Progression, starting TDM1
 

That is good news! I know that had to be a relief for you. I hope you continue to get good news like this. :)

Re: Progression, starting TDM1
 

Oh Tracy, that is fantastic news, you just made my day!!! YAY!!

Carol Ann

Re: Progression, starting TDM1
 

That's fantastic news. Keep your spirits up.

Re: Progression, starting TDM1
 

So happy for better news. An early gift

Re: Progression, starting TDM1
 

I am so happy for you Tracy! What a roller coaster ride!

Re: Progression, starting TDM1
 

Tracy,

So happy to read your latest post Tracy! That is such great news. You must be absolutely thrilled. I've been thinking about you and praying that your body would respond well to treatment. So wonderful that it has. Now that is the kind of Christmas gift we all wanted!

Take care,
Brenda

Re: Progression, starting TDM1
 

I have no experience with Kacyla but wanted you to know you're in my thoughts and prayers for any easy recovery and YAY about the hair (although I loved not dealing with it during treatment :)

Re: Progression, starting TDM1
 

Great news, Tracy!
Wishing you all the best and continued success with your treatment.

all the best
caya