Bumping up for elliejane
Hi dennymac can I ask how long you have been having h&p please? I’m pinning my hopes on being able to continue beyond my initial 12m and for as long as I’m stable. Had a solitary bone met at diagnosis which cleared with 8 rounds of chemo along with the h&p. Amazing stuff, feel so lucky. Thank you. Xx
Ihave just been diagnosed with secondary lung mets. I read in an earlier post of yours that your lung mets had gone. Is that still the case? I hope you're doing well.
Bumping up for Lazygranny
Bumping up for Nicky76
I think when they lost the side effects they tend to include the cycles where you have Docetaxel. This is when the wbc and hair loss occur. After the chemo part has stopped your hair should grow back and also your blood shouldn't be affected by Herceptin and Perjeta alone, although you will probably have blood tests each cycle just to check them. I think quite a few ladies have gone back to their jobs after finishing the chemo part, or may not have stopped working in the first place so I hope you can go back to yours. Believe me the H and P part of this regime is a walk in the park compared to having chemo thrown in as well!
Bunny, I drove school bus for 7 years with my mets and chemo. The last 5 years I've worked at our local senior center and still do! Both of these jobs were germ factories!! My white count a have been l I w a lot of times. In the last four years, I haven't even had a cold. Do what you think you need to do, to keep on living life! FF
new to the forum but not new to the cancer.
had breast cancer 7 years ago.
secondaries found in lungs and liver in December. Was earth shattering.
have just had no. 5 of doctaxatare, herceptin, and perfecta. No. 6 end of April then continuing on perfecta and herceptin.
have had herceptin before with no or little side effects. Just wondering how side effects for perfecta - I understand everyone is different but just wondering because this time round chemo has knocked me for six dealt much better 7 yrs ago.
conscerned about the listed side effects of hair loss - already have it but would like it back! And the lowering of white blood cells. I would like to go back to work but I work with families and young children and if this is the case about the blood cells I could be putting myself in a vulnerable position.
thanks for your time x
bumping up for bunny71
Bumping up for Di
Hi feral jay how's your mum x x
Hi fergal-jay, that's fantastic news about your mum. I'm so pleased for you all. It is a really good combination which is still having good results.
Mine continues to keep me stable too. My heart is really picking up thanks to nicky's suggestion of seeing her heart consultant. It's so much better and I'm so relieved.
Hope everyone is continuing to do well. Been a bit quiet on here lately.
Hi all, sorry I've been away such a long time, how's everyone doing?? Please let me know how your getting on as love to hear the positive news.
My mum is doing well at the moment, she has all her treatment at the local hospital luckily so no treatment they are really happy with her and decided she doesn't need as many scans as she has been having so hopefully she has one soon as she's getting a bit ancy she likes to feel they're keeping tabs on it.
for those that are new and don't know about mum she has sbc with liver nodes she was supposed to have docetaxol, pertuzumab and herceptin but had an allergic reaction to docetaxol so has only ever had the other too. Shes been having treatment for around 18 months now and the liver is looking loads better they struggle to find the spots on her liver and her breast lump has significantly reduced. She has though had to have a scooter now though as she finds she cannot walk for long due to a lack of energy from the treatment. This makes her absolutely livid lol as she's 56 and is annoyed she can't do that much any more
Hope your all well xx
Bumping up for Jadicakes
ps Yes chocolates, we must meet up whilst you're off. However my clinic day tends to be rather full but any excuse to go up to London you can count me in 😊
Thank you Nicky and Marie. Yes it has been a huge weight off my shoulders. I now feel as if I'm doing something. That was important to me - I don't want to stop treatment. I currently have a good quality of life generally and have learnt to live and adapt to the side effects. I felt the option that I had been presented with locally was just not good enough. It had huge implications on me and what I wanted. I really hope now the new meds offered don't give me too many side effects and I tolerate them well. Thankfully it's the summer hols soon so as my meds are increased I won't be at work so can take things a bit easier whilst I adjust. I saw him last night and he emailed today with everything he said, directions to take medication and how to contact him. Very impressed.
and Nicky - he is so qualified yet still so young. He listened, explained everything and let me make my choice. I see him again in two to three weeks to see how I'm getting on.
Yes e's lets meet up - Marie you can come too as you're special xxxx. We could look at August when you're next down Nicky. I'm off work then so let's pm each other and sort it out.
Hi chocolates, this is all good news, so pleased for you.
Im so glad the appointment went well, as I said I'm sure you have had a weight lifted off your shoulders as you know you are in such capable hands. He is so aware of the problems regarding treating cancer and heart problems that he is now the only cardiologist I trust with my heart medications as I know he knows exactly what I can take and what dosage. As to meeting up at one of his clinics I usually go to his (NHS) clinic on a Tuesday afternoon and am not there now until August. However we can always arrange to meet up independently of the clinic and compare notes! We must be on pretty much the same regime for SBC and heart!
Hi Nicky, just back. Can't thank you enough - yes I saw the same man and he was amazing. He is very proactive and has changed my meds and is willing to treat me. I'm so pleased. Spoke through everything and see him again in a fortnight. An absolute gentleman. Totally got where I was coming from and understood that I worked and the meds needed to fit round schedule etc. He thinks he can keep me on h&p with no more breaks. It's what I wants to hear. And the treatment I wanted to have. I don't want to stop again so this is just a perfect fit.
thanks so much. I'm so grateful. When are you next there - we might eventually get to meet up!!
Hello elliedog, well done, and long may it continue!
And, Chocolates, good luck to you with your appointment. Well done for being proactive!
Hi chocolates. Hope everything goes well today and you come out with a treatment plan that will strengthen your heart - I'm sure that will be the aim from both sides! If you are seeing the consultant I have given you the name of you will find him THE nicest doctor I have ever seen 😊 He really is understanding and like me you should feel much calmer once you have had your appointment, he really is the top man in this field.
Elliedog - that's amazing news. I'm so so pleased for you. It is a fantastic combination isn't it. Keep looking after yourself.
nicky, I go for my heart appt tonight with the dr. Have my heart echo this morning with local hospital. Hoping that is stable and then off to talk through everything with consultant tonight. I'll let you know how I get on. Heart predictably playing up this morning - a little anxious about everything but am pleased I'm being proactive rather than reactive.
hope everyone who has scans/results/treatments this week is ok.
huge hugs, hxxx
Great news elliedog, glad you had such good results. I also know of a lady who has been on Herceptin for about 15 years and continues to do well on it. She first had it when you used to have to pay for it but her consultant managed to get it funded for her as a named patient back in the day.
Hi chocolates, let me know if you need any more info about the heart specialist. I'm glad you are getting a referral and fingers crossed a solution can be found. P M me whenever you need to.
Nicky, thank goodness your scan results are clear. So so pleased for you. What a great combination this is. Welcome skippy, no one wants to be here but we are a very supportive bunch and like the others say just ask away. There is nearly always someone ready to help you. The chemo bit is the worst, but once you're through that bit most of us find things settle down and you get back to a new normal. Fingers crossed for you.
nicky, just wanted to let you know my onc is referring me to the specialist at the Brompton you recommended. Hopefully I'll see him in the next couple of weeks.
lots of love,
Welcome to the secondaries club - somewhere none of us want to be!
If you read back over this thread you will see some of our experiences as well as how we are doing now. I don't think anyone since julzd has started this combo recently so you may be the only one posting on here that is going through the chemo part of the regime. The one place I found information out about the side effects of the chemo (docetaxel) was in the general part of the forum under Treatments and in there the Chemotherapy bit. If you check out any threads regarding docetaxel (not other chemo's as they have different side effects) you can learn a lot about what to expect from the 6 cycles of chemo and how to deal with them. The H and P don't really seem to show their side effects whilst you are on the chemo element, you tend to notice their lesser side effects once the chemo is over and done with. But keep posting on here for advice if you have any particular problems as well as on the very active Bone Mets Please Join In thread where a lot of us share infor etc about bone mets as well as our other mets.
Good luck and I hope this combo works as well for you as it appears to have done for all of us!