feedback please

clisa · 02-07-2006, 07:50 PM

Thanks to all who helped me out with my minor breakdown last week - especially Sherry. A week later I have switched to a new oncologist and have gotten approval to go ahead with the Xeldoa + herceptin + navelbine chemo that my other oncologist could not get for me. Officially I am on navelbine and herceptin and am getting the xeloda unofficially through my extended health plan - a little tricky but worth the effort to try to get my liver mets under control.

I am a little worried about how hard this combo will be for me to tolerate as up to now I have been able to maintain a fulltime job. Ayone who has been on this combo who could give me a heads up on what to expect would be appreciated. I will be getting herceptin/navelbine then 2 weeks xeloda and then another dose of herceptin/navelbineat the end of the 2 weeks. One week off and start over again.

Feeling better than last week - still a little freaked out as my liver landed me in the hospital sunday - with either a tumour bleed or some necrosis - they aren't sure but my stomach liver, and ribs feel like I have been kicked by a horse - swollen and sore and can't take a real deep breath.

Steph N or Esther - did either of you experience this when your liver mets were really bad?

Lisa

StephN · 02-07-2006, 08:07 PM

Hi -
Am SO happy to hear that you are getting a treatment that should work well for you.
No, I never had to go to the hospital for my liver - only low blood counts when I fainted.
I had a little bit of a dull ache as the chemos and Herceptin were doing their thing, but nothing like what you describe. I did have a couple of quite large tumors - nearly fist -size - and these just quietly shrunk over the months along with all the smaller ones.
You have done an admirable job of advocating for yourself!

julierene · 02-07-2006, 08:35 PM

I had that feeling for about 2 days after my first 4mg dose of Herceptin. I have 2 liver mets around 2cm each. I still have pain in the area, but it's minor compaired to that first dose of Herceptin. I called my onc the next morning, and told him about how I couldn't hardly talk without sqencing in pain. Everytime I went to take a breath while in the middle of a sentence, I had to inhale slowly. I finally took a pain pill and it wasn't enough. Then I took another one, which he said I could do, and it knocked me out for like 13 hours. I slept from like 7pm till about 8am the next morning. I managed to go to work, and I was pale as a ghost. I could barely turn my body. After the next night, I took 2 more pain pills, slept another probably 12 hours, and woke up feeling MUCH better. I was scared to death that would happen on my next treatment, but it wasn't near as bad. I still had some soreness, but it was managable. My Onc thinks it's a good sign. He says over the years he has heard so many stories of this exact thing, and finds out that the tumors shrinking caused the pain. If the pain had continued, he would have been more concerned that it was the tumor itself. But since the pain subsided over the course of the 3 days after the treatment, he felt like it was something to feel positive about. The jury is out till March, but I think he's right. I get achy in my liver area right after treatments still. I have been off treatment for a week now, and I feel pretty darn good. Thursday I will go in and Friday and Saturday will be days I will hurt in my tumor spots. At times, I am shocked that I had nothing showing in my ribs, cause it felt like I had cracked a rib right by my liver or something. I find it suprising that cell death can be a painful thing. But I guess if bruises hurt, why can't an area of dead cells in your liver hurt? If it's trying to repair, it makes some sense. But then, why do some people have no feeling and others have a lot?

I was always very sensitive to stuff. I thought about my breast cancer and realized I had probably been feeling the DCIS for about 3 years prior to my diagnosis. I just thought my left boob was being smashed too much in my bras since it was bigger... I should have known better! Family history sucks.

If this means necrosis, BRING IT ON! :-) I hope that's what's happening for you too.

02-07-2006, 09:33 PM

Julierene; I bought and read the book "The Making of Herceptin, a Revolutionary Treatment for Breast Cancer - Her2" by Robert Bazell and found it very interesting. In the book he discusses a patient, Kathy Crooks who got her first infusion...the loading dose after which she started to shake all over. After she got home that evening she could barely drag herself to bed. Etc. Etc. On calling the oncology nurse she responded, "Wonderful! That's great! We have a theory; the worse you feel, the better you are doing on the drug." Her scans showed remarkable improvement. So.....good news for you I suspect. Hang in there.

Cathy

clisa · 02-08-2006, 09:39 AM

Not sure what causes my discomfort/pain in my liver area - I think maybe not being on any treatments this week (chemo) while waitng for my new regime to start has caused it to swell and is putting pressure on my ribs or my stomach is stressed and gassy and putting pressure on my liver which then puts pressure on my ribs - who knows - it is best in the AM and gets worse at night. Doctors seem unconcerned.

Praying nothing bad going on in there and trying to keep it as clean as possible - no pills or caffeine or excessive fat or sugar as much as possible - anxious to start my new chemo.

Lisa

julierene · 02-08-2006, 11:50 AM

That is SO encouraging! I felt so bad, I started crying and realized that I had to stop crying cause it hurt too much!! If it was necrosis, I wish I could get another 4mg dose. I didn't want that 4th week to take a break either. But my counts aren't high enough to do them. I was so disappointed though.

My loading dose (1st treatment) was 4mg. 2nd week was only 2mg from then on. I had 3 treatments, 4th was off, 5 and 6 were normal, 7 my counts were too low so Herceptin only (still got pain from that treatment), 8 was off. I go in tomorrow, and I am relieved to be on 9. I have probably till 12 to get another PET scan done to see where we are.

As far as my stomach, I had SEVERE indigestion and acid reflux or something that nothing would help. I couldn't even drink or eat anything that had but minute amount of spice on it.

StephN · 02-08-2006, 12:29 PM

For these stomach sensitivities you will need to take pepcid or the like. I used Ranitidine and it worked like a charm for me. I have NO stomach acid or digestive problems normally, but when on chemos or Decadron I do need the acid blocker.
This will make a big difference and you will not be so gassy either. Modifying my diet to cut out citrus and some other acid causing items was necessary. Apple juice and apple sauce were helpful. Grated apple is also good for upset stomach, along with some soda crackers.
The chemos also strip the stomach and esophagus lining as these are also fast-dividing cells that we need. Thus the digestive problems - some here have also reported hearburn.