The first thing that ran through my mind is that I am going to die. I am negative for ER and PR but positive for HER. Told I need 7 chemo sessions every 3 weeks and Phesgo for the last 3 sessions.
Depending on whether the tumour shrinks I may have a lumpectomy or mastectomy.
Great to hear your wife is two years free and long may it continue.
It's natural to think worse case scenario. Once you have all the knowns at hand, and you begin treatment, you have something else to focus on, so the negative thoughts begin to disperse.
My wife was triple +, so she had the HER thing too. Again, it was so long ago, details might be a bit over the place, but I think you get thigh injections for the HER part of it. That is something that has moved on. The injection used to be yet another IV procedure, but now, it's done over 5 mins via an injection into the thigh. In the grand scheme of what you're going through, it's an almost nothing procedure.
Something i wish people had told us is about the mouth care. Chemo can affect your mouth. It affected my wife badly. Buy yourself a soft bristled toothbrush, even a proper baby one will do. So if you start to get achy gums, use the soft brush. I'd use the soft brush before any problem arose. But do have one in the house. I had to run to Tesco around 11pm on a Friday night for one. Another thing about oral issues. Nip them in the bud straight away because they can stop you eating and drinking. If you struggle with mint toothpaste (it can really nip), get kids toothpaste. Something like strawberry. Kids toothpaste is fine to use as an adult, as it's the same stuff we use anyway.
Constipation is another biggie. Always, always keep on top of that. Touch base with your care team about it even if it's day 1.
You'll probably find insomnia becomes an unwanted friend due to your hormones taking a dive, and the steroids. You might not get it, but do expect it, if that makes sense.
Don't be shy asking questions. I'll happily answer your questions if i can.
Hi ProfBaw, I just would like to thank you for sharing your wife's journey. It sounds very similar to my own. I have IDC, two tumours, cells in tissue and one lymph node I am also triple positive. After finishing EC, scans showed some improvement as tumours have started to shrink. I've had my first docetaxel and phesgo injection into the thigh, from what I know the phesgo will continue for about a year, after chemo finishes. I have been told I will need a mastectomy with full node clearance It was great to hear how well your wide responded to the docetaxel and had lumpectomy instead of mastectomy. I hope your wife continues to feel well. Xx
ProfBaw Terrific post and I very much hope you continue to pay it forward to encourage others - be they sufferers or carers. Huge congratulations to you and your wife on her recovery after such a traumatic ordeal. Long may your wife’s (now) good health continue. Kindest regards.
Sandradee As a man with bile duct cancer (inoperable), I tried the cold cap. Once. It was awful. I’m currently on my second round of chemo/immuno therapy in the space of 12 months since being diagnosed in April last year. Since I lost a lot of my hair the first time (it thinned out hugely but then grew back well) I decided to see if I could avoid some of the side effects the second time around. Aside from looking like Elvis in his more portly years (I had definitely put on a huge amount of weight as a result of the anti-nausea steroids) I thought holding onto my hair would make me a feel a little less ravaged by the chemo drugs. It was, in a literal sense, a ‘vain’ attempt.
I tried the cold cap that I’d seen so many brave men and women using, and gave it a go. It needed to be applied before the first treatment and be in place at least 15 minutes before I received the dorst chemo infusion (Cisplatin in my case). My hair was slicked with a conditioner to make better contact with the silicone cap but within 5 minutes I was experiencing the worst ‘ice cream headache’ I’ve ever had and asked the nurses to remove it immediately. I wasn’t given any paracetamol so maybe that was a factor but truth be told I was a total wimp! It was pure agony. I just wasn’t as brave as all the others. You might say I took my hat off to them :-).
My own view is that it’s perhaps a great deal easier for a man to lose his hair since so many men do so in the natural way of things. Many men embrace a bald or shaven head as a style choice whether they need to or not. But for a woman, I’d say losing a head of hair must be a much tougher challenge for her to bear.
I’d say you must give it go if it’s available to you and see how it goes. It must work for a lot of people. But we all respond to the various treatments in our own way - we’re all so very different. You may be just the right person for whom it works wonders. But don’t be discouraged if it doesn’t. I’ve just read some remarkable posts from those who’ve found terrific ways to ‘style it out’ until your hair returns. And I’m told that when it does, it comes back with a a bit of a lusher, thicker flourish! So that’s something to look forward to as well.
Good luck and God speed your full recovery! Kindest regards.
Dear ProfBraw, wise words indeed on the mouth issues. I have a few tips for Sandradee too. I too have problems with a very dry mouth. This gives rise to lots of mouth ulcers (gums and tongue) which makes it hard to eat and talk with a lisp. So, I too use a soft bristle brush and use a very good mouthwash called Difflam which is good for killing infections and easing pain and discomfort. I use it after brushing and before eating. Also there’s a good toothpaste called Biotin which is very good too. I also brush using warm water because the cold hurts my teeth.
And, if you find the corners of your mouth becoming sore or split (very painful) the over the counter Blisteze is very good. Apply anytime but just before bed allows me to wake up with a definite improvement.
You have to be careful using salt when you have a dry mouth, which can be common during chemo. Salt dries your mouth further, so it's better to avoid it if you can. However, this may differ between individuals. Outside of dry mouth, salt is a good way to relieve inflammation.
