Dear All I am a blog virgin who has just had surgery to remove a small but aggressive tumour that was HER2 positive and now is looking at having Chemo and Herceptin. I would very much like to hear from anyone out there who has gone through this treatment to get a sense of what's in store. Jude

Hi Jude, I just had a long response half written, & with my dodgy fingers, hit something & lost the lot, lol. Welcome. You've come to the right place to ask questions. You will get answers. I can't help with the herceptin part, I didn't have it. A lot will depend on what particular chemo you have. Ask, ask, ask. The oncologist & oncology nurses will be able to help. Listen to their advice. Always aim to have someone else at appointments with you. They will pick up on different things than you do. one thing I would recommend you ask about it different delivery methods for your chemo. I opted for a portacath, as I knew venous access would be challenging. Although I only had 6 chemo cycles, I have never regretted that decision. Take it all one day at a time. Take care, & stay in touch Lyn

Hi Jude So sorry you had to join us but glad that you did because it is a great way to connect with others who truly understand what you are going through. I too am HER2 positive Grade 3. I had surgery on 12 Nov and will start 4 cycles lasting 12 weeks of chemo (docetaxel, and carboplatin) this Wednesday 16 Dec. I will also be given Herceptin with the chemo which will continue for 12 months (17 cycles). After chemo finishes I will have 30 sessions of radiation. I couldn't have a portacath inserted for all the injections before I commenced chemo but I will be have one put in later on to save my veins. There are other ladies on here who have had chemo and Herceptin so I ask their advice all the time. It's really important to have someone with you at your appointments with the oncologist. There is a lot of information given and it helps to have someone there to remember what was said as well as to ask questions. It also helps me to write down questions beforehand. The doctors will test your heart every 3 months while on Herceptin. I had a heart scan today. No big deal. Two needles that I couldn't feel and 15 mins on the table getting scanned. Tomorrow I get steroids before chemo starts on Wednesday. I hear the steroids can give some women bursts of energy so I am looking forward to that. Other than that I will have to wait unit Wednesday to see what it is like. All the best with your treatment. Nadine

Hi Jude, Like Lyn says a lot will depend on what sort of chemo you are having. Everyone reacts differently to treatment. Have you received a "My Journey kit" from BCNA? There is a section in there about Herceptin that i found very helpful. Do you have an appointment scheduled with a medical oncologist?When you see them you will get more information about the chemotherapy regimen that they recommend. You will hopefully also get an extensive education session from a chemotherapy nurse about the treatment and its possible side effects. I am having Herceptin with my chemotherapy but the side effects I'm experiencing are more to do with the chemo rather than the herceptin. I had to have some baseline tests of my heart function before i started treatment - i had a cardiac echo and ECG (both non-invasive tests) but some doctors order different investigations depending on your medical history. My herceptin is being given every three weeks for a year, yours might be a different schedule. I will have an echocardiogram three monthly while i am having herceptin to check that it hasn't affected my heart function. Asking the medical oncologist and/or chemo educator/ nurses about venous access is good advice. I have been able to get through my chemo so far using a cannula inserted into a vein in my hand or forearm with each cycle but my medical oncologist says there are other options available if my veins don't hold up for the rest of my chemo. Good luck with it all. Doll

Hi Jude, welcome to the network, I hope you find the support and information you're after. The ladies have already given you some great information, and I'd definitely agree about having a portacath inserted, if possible, mine really helped as I only have a few viable veins in my left arm for needles / cannula access. I had 6 cycles of chemo (Taxotere & Carboplatin) and 12 months of Herceptin in 2012. The Herceptin was given every 3 weeks and started at the same time as the chemo. The first cycle of TCH was administered very slowly as the nurses keep a close eye on how you go and it took me about 6 or more hours to complete, so it's good to be prepared with lots of distractions; reading, music, ipads etc. Chemo days were all pretty non-eventful as they give you anti-nausea and allergy suppressors, so often any side-effects kick in a few days later. Everyone seems to react differently, so hopefully if you get any side-effects they will be minimal :-) You do need to make sure you keep an eye on your temperature / feeling unwell, particularly a week to 10 days after chemo as that's when your white blood cell count can drop really low and you can be at risk of developing an infection. This did happen to me after the first chemo and I had to go to hospital for antibiotics for about 5 days but was then given neulasta injections (a white blood cell booster) after each subsequent chemo which stopped any further infection issues. Herceptin tends to be tolerated well by most people and Doll has given a good description of how they monitor your heart throughout the 12 month treatment. I did get some lowering of my heart function towards the end of treatment but this was managed well (low doses of heart drugs) and was only temporary as my heart function was back in the normal range within 6 months. As always, talk to your team about anything you might be concerned about, even if it seems small or insignificant. Best of luck with it all and feel free to keep asking questions! Cheers, Jane xx

Dear Jude I had six months of chemo ( A/C and Taxol, 3 months each,) and 12 months of Herceptin. Your chemo will depend very much on your oncologist's assessment of what will work best. As I am sure you will have been told, reactions vary immensely and I can't honestly say I know of any particular reason why. Some will say attitude is everything but I don't think it is as simple as that. I had virtually no side effects from the A/C - no fatigue, no nausea. I got peripheral neuropathy, a blood nose and lost my tastebuds from the Taxol. Watch your fingertips and toes, if tingling occurs ask for advice on dealing with it straightaway. Iced water and Vitamin B may help. The blood nose was annoying, but Vaseline helped. Tastebuds were also annoying but as a colleague ended up with everything tasting burnt, not tasting very much at all wasn't so bad. All these got better after my treatment was complete. And my hair started growing back while I was still on Taxol which was unexpected. I did get an arrhythmia, possibly A/C accelerated it, no-one quite sure. But it is manageable and I am fine. I also got lymphoedema, due to an axillary clearance. Also manageable. Best advice I can give is don't try to overthink these things, some may never happen. If some do, you will find ways of managing them as and if they arise. If you worry about them all, you will drive yourself silly and impede your recovery. Curiously, cancer is a really good time to live in the moment as far as possible. I chose to work throughout, it kept my sense of humour and proportion intact, but every one reacts differently, give yourself space to take time out if you can and want to. Herceptin was a doddle by comparison, I have had no negative side effects. Three years on from diagnosis, I look well, I feel well and appreciate every benefit from my treatment. Yes there have been some costs, but looking back they fade, and can't compare to the likely alternative of not having treatment. Very best wishes

Chemo and Herceptin | BCNA Online Network

Doll
Member
10 years ago
Hi Jude,

Like Lyn says a lot will depend on what sort of chemo you are having. Everyone reacts differently to treatment. Have you received a "My Journey kit" from BCNA? There is a section in there about Herceptin that i found very helpful.

Do you have an appointment scheduled with a medical oncologist?When you see them you will get more information about the chemotherapy regimen that they recommend. You will hopefully also get an extensive education session from a chemotherapy nurse about the treatment and its possible side effects.

I am having Herceptin with my chemotherapy but the side effects I'm experiencing are more to do with the chemo rather than the herceptin. I had to have some baseline tests of my heart function before i started treatment - i had a cardiac echo and ECG (both non-invasive tests) but some doctors order different investigations depending on your medical history. My herceptin is being given every three weeks for a year, yours might be a different schedule. I will have an echocardiogram three monthly while i am having herceptin to check that it hasn't affected my heart function.

Asking the medical oncologist and/or chemo educator/ nurses about venous access is good advice. I have been able to get through my chemo so far using a cannula inserted into a vein in my hand or forearm with each cycle but my medical oncologist says there are other options available if my veins don't hold up for the rest of my chemo.

Good luck with it all.

Doll
Nadi
Member
10 years ago
Hi Jude

So sorry you had to join us but glad that you did because it is a great way to connect with others who truly understand what you are going through.

I too am HER2 positive Grade 3. I had surgery on 12 Nov and will start 4 cycles lasting 12 weeks of chemo (docetaxel, and carboplatin) this Wednesday 16 Dec. I will also be given Herceptin with the chemo which will continue for 12 months (17 cycles). After chemo finishes I will have 30 sessions of radiation.

I couldn't have a portacath inserted for all the injections before I commenced chemo but I will be have one put in later on to save my veins.

There are other ladies on here who have had chemo and Herceptin so I ask their advice all the time.

It's really important to have someone with you at your appointments with the oncologist. There is a lot of information given and it helps to have someone there to remember what was said as well as to ask questions. It also helps me to write down questions beforehand.

The doctors will test your heart every 3 months while on Herceptin. I had a heart scan today. No big deal. Two needles that I couldn't feel and 15 mins on the table getting scanned.

Tomorrow I get steroids before chemo starts on Wednesday. I hear the steroids can give some women bursts of energy so I am looking forward to that.

Other than that I will have to wait unit Wednesday to see what it is like.

All the best with your treatment.

Nadine
lrb_03
Member
10 years ago
Hi Jude, I just had a long response half written, & with my dodgy fingers, hit something & lost the lot, lol.

Welcome. You've come to the right place to ask questions. You will get answers.

I can't help with the herceptin part, I didn't have it.

A lot will depend on what particular chemo you have. Ask, ask, ask. The oncologist & oncology nurses will be able to help. Listen to their advice. Always aim to have someone else at appointments with you. They will pick up on different things than you do.

one thing I would recommend you ask about it different delivery methods for your chemo. I opted for a portacath, as I knew venous access would be challenging. Although I only had 6 chemo cycles, I have never regretted that decision.

Take it all one day at a time.

Take care, & stay in touch

Lyn

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