Mets Pain or Necrosis Pain?

[julierene]

For my 4th weekly treatment, Onc decided to skip. He said 3 weeks on, 1 week off. This is the first week I have felt better. I have been so sore and achy since I started taking the Taxol/Paraplatin/Herceptin weekly treatment. My first treatment was 4mg/kg. I slept the first night, by the second day I started having some cramps on my liver (2 mets on my liver). I had never felt sore on my liver before. By end of the first day after the treatment, I was so sore I could hardly breathe without wincing. I drugged myself up with 2 pain pills, and by the next morning, I felt a little better. It took 2 days for the feeling to subside.

The next 2 treatments were 2mg/kg of Herceptin, and I hadn't had that terrible pain in my liver, but I have ached and felt sore in so many areas it's ridiculous. I have managed so far.

But on the 4th week, I had no treatment, and finally felt better for the first time in a month. I don't mean just better, but SIGNIFICANTLY better. After the first really bad day, I asked why I was cramping so hard. They said it might be the disease itself or necrosis. I thought, if it were the disease, wouldn't it be hurting more and more each day, each week, each month? For the first time, I feel so much better. It just happens to be the week I haven't had treatment. Is this coincidence?

OR does Necrosis Hurt?! (BAD!)

Will the 5th treatment be 4mg/kg again? Or will it be 2mg? I thought he said it was 2mg. After the cramping from the 4mg treatment, I almost hope that it will be 2mg. Then again, I hope it will be 4mg again so maybe it will give a big punch to the mets in my bones and liver.

[Nicola]

Hi Julierene,

I have had on going pain from liver mets and bone mets since starting my treatment. I have pain in the liver and also across my entire abdomen and in my spine. It usually isn't a constant pain but rather a cramping feeling much like you described. I have even felt bloated and had aches in my joints. Tylenol and Seltzer water work well for joint pain, Seltzer water works because of the Quinine in it. My onc has said this is normal with treatment and like yours has said it can be from the disease itself or necrosis. I like to think of it as the cancer being under attack and dying off. I can't wait for my next CT scan of the liver to see how I am responding to treatment. The waiting to me is the hardest part. Be sure to tell your onc about any and all side effects you are having even if you are repeating yourself over and over again.

Your first treatment of Herceptin 4mg/kg included what they call a loading dose, they give this at the onset of treatment and then lower the dosage there after so your next treatments should be 2mg/kg.

Hang in there and don't be afraid to take medication that is approved by your onc to keep yourself comfortable and out of pain. Be sure to drink lots of water to help flush the liver, especially right after treatment.

Wishing you all the best,
Nicola

[julierene]

When were you dx? I am supposed to be getting re PET scanned in March. I think it would be better if I found out sooner. It seems so long!

A nurse from MD Anderson told me that new scans were done every 6 weeks.

Is there a reason NOT to do them every 6 weeks?

[Nicola]

I was dx in March of 2004 with DCIS stage 0 non-invasive BC, ER PR positive, had a lumpectomy for microcalcifications and then a second surgery to recheck the margins which came back clean, then had radiation. On Dec 1, 2005 I had a gall bladder attack and when they went in to remove it they found extensive cancer in my liver in both lobes HER2+++, ER PR negative in the liver (which is strange) they did a CT scan and a bone scan and found bone mets on my T8 & T9. How I went from DCIS stage 0 to stage 4 in a year and half is beyond me, the only thing I can figure is that there were missed cancer cells that went into my blood stream and metastasized.

My understanding of why they do a CT scan at eight weeks as opposed to at six weeks is because it gives them a better perspective as to how you are responding to treatment. I know it is so hard to wait but hopefully it is worth the wait to get a better over all picture of treatment results.

I wish you all the best, a good person to talk to is Gina, look for her posts as she is very knowledgeable and has gone through the same thing since around 1997. Feel free to e-mail me directly too at VaMoonRise@aol.com, we can encourage each other along.

Big Hugs,
Nicola