My wife is in the above treatment, 3 weeks on, one week off. She's only done one cycle, just starting the second. Too early to tell if it's working, seems to be but my question is how should she be feeling? After treatment on Friday she goes to bed and stays there until Sunday. Is this normal? Should I encourage her to get up and move around or leave her to rest? I only ask as this treatment should carry on for as long as it works but it feels too severe to me? Chemo should improve quality of life but if she's in bed all weekend then gets to do school runs with me all week just to get to Friday and go back to bed, surely that can't be right? Are we managing it incorrectly? Is the dose too high? We don't want to reduce it as we want the tumor to shrink and her horrendous cough and breathlessness to subside but this just feels wrong to me? I hate to say it but she has little or no quality of life like this.
Sorry for the longer post, I'd really appreciate your independent thoughts and personal experiences with your own treatments. Susie is 38 years old.
Thanks in advance. Leo XXX♥️
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Winner123
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Never having been on that combo, I can’t say if it is normal or not. I would call the oncologist or the nurse hot line and ask. Is her breathlessness new with this combo? If so, you need to report that also.
She's got a large mass in her lungs, upper hillar, that's causing the breathlessness. It's not new, it's been going on for months along with the cough. We are hoping treatment shrinks the tumor and alleviates the symptoms. God I hate this disease. I'd sooner be hit by a truck.
Good Morning Leo. I would just like to give you some reassurance that life does get better.I too, was diagnosed with cancer at the very young age of 39. I am now nearly 78 and still going strong, albeit having had a further three occurrences. I do understand that you may feel helpless in this situation but your support is paramount.
My doctrine has always been ask questions tirelessly and do research. I do feel that in my experience of living with this condition and having six mis-diagnosis that you have to be resilient and ‘stand strong’.
You both are in a different World of medicine in 2021 than I was so please take reassurance from that that science has moved on and there are treatments out there to ‘tailer fit’ the situation.
Thank you, that's very reassuring. I do try to read as widely as possible, I've turned up some great info. Anne's book off this site has been a great resource for me, I thank her and everyone here for that help! XX ❤️
It's the first time depression has been mentioned. I'm not sure if even thought about it so thank you. I will see how she gets on and talk to the team later. Thank you. X
I went back and read the history on your Susie. I have Mets to my right lung also. When it was found I was on ibrance. My breast biopsy was Er+ Pr- Her2- The lung Mets multiplied after only 3 months. A lung biopsy revealed the lung met to be Her2+. So I had my breast removed to get rid of the Her2- and stated Herceptin and Perjeta Tito fight the lung Mets which was Her2+. It has worked so far. My lung is clear.
So I guess I’m asking... is the lung tumor triple neg also?
Hi. We only had one biopsy from the lung early days. They didn't get enough sample to define so assumed triple neg. We had samples taken from lesions under the skin, they are PR 0, ER 0, but HER2 score was 2.77 so borderline, actually positive using UK spec. This didn't affect the treatment prescribed.
Here in the US if the IHC test is 2+ (not 3+) it’s the same as what your dr says... borderline. However you can request a FISH test that will give the determination for sure. If her lung met is Her2 +, herceptin is a miracle drug.
As soon as it was found out that I had both her2- and her2+ I was put in IV taxotere, herceptin, and perjeta. The taxotere was for 8 cycles and worked on all of it. It was rough but i knew it was for only those 8 times. I have continued on the herceptin and perjeta for the past 2 years with basically no side effects.
Maybe it’s worth asking her oncologist since she’s having such a bad time right now. Btw I’m 53.
The best advice I can offer is do not hesitate to call the Doctor or the nurse. They k wnow the answers because they know her history. They will put your mind at rest. I think it is very common to suffer from fatigue after IV Chemo and I have also read that it gets better with time. I have no personal experience in this situation.
I am on a different immunotherapy drug along with Abraxane. I am usually tired the next day couple of days, but not to the point that I need to stay in bed. I am able to do lite household chores and go for a nice walk. I don’t have cancer in the lungs, so I don’t have the issue with SOB. I would contact the doctor and let them know how your wife is feeling. Everybody responds to treatment differently- hoping this issue gets resolved quickly. Blessings to you and your wife.🙏
Just an update, we did see our doctor. It was obvious Susie is not responding to Abraxne and Immunotherapy so we stopped it. We are now going to try Capecitabine. Susie had an MRI and we now have multiple brain tumors too now, one 5cm. Yet another battle. I hope Capecitabine works to get rid of something, we just keep getting bad news on this! Just praying for SOMETHING to work. XXX ♥️
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