Wow, the Last Herceptin Done

Hi everyone,

It’s been a funny old day. I woke up early with a migraine…then got stuck in a traffic jam for 45 minutes turning up to my appointment late, but only just. My friend Gill and I went together. At the hospital, we met with Sandra Kailahi from Tagata Pasifika. Kylie and Moera also arrived so there was a big support group. My Mum then turned up with home baked scones to thank the nurses. [Read more…]

I’m About to Finish my Cancer Treatment

It is hard to believe that finally, the days have arrived in this countdown to finishing my last Herceptin. On Thursday I will have my last Herceptin cycle and from that day onwards, I will be focused on recovery and re-starting life on a different basis.

Lots going on

I remember this ‘end of treatment’ time before. It seems so exciting that I have finished. But at the same time, it is a challenging time in that I don’t feel completely well yet. And I now have to adjust my thoughts from hospital visits to no hospital visits and re-orient my brain from ‘healing cancer’ to ‘recovering from treatments’. The other challenge is to learn to live as if I won’t have cancer again knowing full well I just might. I know everyone might die at any point so I am not unique in this but recovering from a life threatening illness certainly clears the mind about the reality of the life cycle. [Read more…]

Herceptin Diary : Two Cycles to Go

Having Herceptin at Wellington Hospital

The last two Herceptin cycles were quite different. The second to last one made me feel tired, a little nauseous and I had quite a few headaches. With the most recent one, I felt really good. It’s interesting how each cycle seems to have its own personality.

I have still struggled with headaches and migraines. I started taking a headache prevention medication and definitely they reduced but not completely. Last week, I had so much to do and lots on my mind and I ended up having two migraines, two mornings in a row. So I haven’t quite got the answer to migraines yet. But going to acupuncture helps as does the chiropractor. The main thing seems to be keeping my stress levels way down. And giving up chocolate.

Finishing treatment soon

So here I am in early July and I only have two Herceptin cycles to go. I can not wait to stop going into the chemo day ward each 21 days and putting pressure on these fragile veins on the back of my left hand. However, it also feels odd. I have been in the hospital system since April 2011 having surgeries and chemo and whatever scan. It feels precarious to leave the safety of the hospital. I guess I have been institutionalised to a degree.

I know what to expect from having bc last time: for a few months after treatment ends, there is an anxiety in existing without doctors constantly doing check ups . It feels like my life and body are a bit unsafe – that I need to be monitored more. But after a few months, the feeling starts to subside and turns into anxiety around the time of follow up appointments e.g. a mammogram, or the five years of follow up appointments with my breast surgeon. Each time I return to the offices where I was diagnosed, I feel a bit upset. Sometimes I burst into tears in the waiting room which doesn’t feel like a good look but is quite common.

Fear of recurrence

All the feelings of trauma or nausea are triggered each time I go back to the hospital and meet my surgeon. Even when she will say “everything is fine”, I feel suspicious. In my mind, there is a conversation that goes something like this “well, I felt fine before but I wasn’t fine – so surely now, I have to be extra vigilant about looking for cancer in my body”. Every ache or pain, lump or bump triggers an anxiety or tears. Is this cancer AGAIN?

Well no, it’s actually an illusion, my mind tricking me. At this point, I am cancer free and from my research, any lump in my body that is suspicious will be found by a mammogram or my specialist at about the same time as I would find it just living normal life (as I have regular appointments with a breast specialist). So I can relax and forget about cancer and let the specialists take care of that.

It does feel surreal…I am getting to the point where I can kind of forget about cancer. It takes longer than that mentally though. And there is a tiny anxiety that after four and a half years after the first bc, I had completely forgotten about cancer. And then, there it was again. But once again, I must go out in to life and forget about any fear of recurrence. My best medicine is to live without any fear, have fun, live a balanced life, have check ups…just get on with it.

The new life plan

Time will heal everything and fingers crossed, I will not be going through this all again. Maybe I can start to plan the next stages of my life. Once I finish Herceptin, let Herceptin leave my body over a few months…and then, start my new life. It is exciting but it feels quite big. Another big milestone is just around the corner.

I feel that I have changed a lot with this breast cancer and all the treatment. It has made me realise that life is short lived and not to concern myself with doing things for stability, security or money. It is time to live as if I have no fear of those things. To stand up and be me, and just do what I want to do and what makes me happy. Okay, I might not own a house right away but I have time to enjoy life.

What helps with the fear of recurrence?

  • Getting the facts from your specialist. There is no need to constantly monitor yourself or live in fear.
  • Counselling or other types of emotional therapies. You have been through a trauma and it is time to heal all these difficult experiences.
  • Support – seek out support from a friend or a group that understands.
  • Time is the great healer, take time to recover from bc and gradually fears will diminish.
  • Plan an end of treatment celebration or holiday.
  • Write about your experiences and get the feelings out of your system.
  • Read the Cancer Society resources on finishing treatment and talk to a Cancer Society nurse.
  • Don’t ignore the fear. But do something to move the fear!

What has helped me at this milestone point?

  • Friends and family.
  • Fun – doing enjoyable things.
  • Writing down my feelings.
  • Planning an end of treatment holiday to the South Island with three friends.
  • Talking to supportive people.
  • Art therapy and other support networks.
  • Not putting pressure on myself to go back to work until I’m feeling a lot better.
  • Leaving major life plans until now – not trying to work it all out well in advance of the end of treatment date.
  • I just completed a two year plan for things I want to do in the next two years.
  • My website has been great therapy and a positive focus.

Let me know – what are your tips to life post-bc and with fears of recurrence?

x Andrea

 

 

Chemo Diary: Herceptin #13 out of 17 Cycles

I just had my thirteenth Herceptin cycle. I only have four more to go…and that will be one year of Herceptin (or two years of Herceptin if we are strictly counting).

It went well. I get quite tired from the Herceptin and feel like I’ve got a hangover for five days afterwards. My main issues are headaches and migraines. On a good week, I have 1-2 mild headaches and on a bad week, one migraine and a few headaches. The trick with these is that they don’t respond to painkillers. I think they are a special type of Herceptin headache. They are enough to stop me doing quite a few things. [Read more…]

Chemo and Herceptin Diary: Half Way Through

I haven’t checked in for a while as there wasn’t too much to say.  But now that I’ve reached the half way mark for Herceptin (yahoo), it is a good time to do a catch up.

As of last week, I completed Herceptin Number 10 out of 17 Herceptin treatments. Treatment goes for a year and is every three weeks. When I reached the half way mark in February, it just seemed daunting to have another six months to go.  But now that it’s March, it’s only five months to go.  Breast cancer treatment can take a long time… but that is an investment in my future.

Highlights in the last few months:

Hair not falling out. My hair has completely stopped shedding and my scalp is no longer sore.

Sleeping properly. Somewhere around mid-January, I started sleeping properly without medication. In fact, I started sleeping 10-12 hours a day. It is a huge relief I must say.

Slightly improved skin. My skin no longer looks chicken pox like on my face but there is definitely still a problem with acne breakouts on my face and neck. On talking to my GP and breast surgeon,  my body is still processing all the surgeries, chemotherapy and Herceptin. They recommend mild normal acne medication.

Getting back in to normal life.  I have moved out from living with my parents and am flatting on my own. It’s nice to have some more independence back and see more friends. Also time to process everything that happened in the last year.

Still challenging:

Nose bleeds. Are still around…not as bad but just here and there caused by the Herceptin and Chemo damaging membranes. Tip: My Breast Surgeon said to use Vaseline, dap a bit up each nostril to protect the nose.

Headaches. These are my main bug bear at the moment. Sometimes up to four days out of seven. And unfortunately, do not respond to any pain killers that I have tried. I think it is a combination of just a lot of change and stress, with the medications.

Slow pace still. I still have limited energy reserves. I can do one or two outings or appointments a day if they are not too full on. But if I cross the line, I get very tired. I still don’t schedule very much but at least, I can go out and do stuff pretty much as normal.

Other than that, I am doing well. I am back into many of the normal routines and really enjoying putting time into Breast Cancer Nirvana.

Hormone therapy:

On discussion with my Oncologist and Breast Surgeon, I decided not to continue with hormone therapy at this stage. I had already been taking hormone therapy for around 4 to 4.5 years and then had awful side effects when I tried the last one. Apparently, the estrogenic level of the breast cancer tumour was approximately 20% which is not that high. The Her 2 positive level was higher and for me, the most important thing is for me to complete the Herceptin treatment year (a total of two years in the last five years). N.B. every type of cancer is different and I am not advocating this move for anyone else; it is specific to my diagnosis.

What has helped me in the last few months:

  • Support from family, friends and various complementary therapists (EFT, art therapy and Pink Pilates mainly)
  • Fun times and chats with friends
  • Going flatting
  • Time to rest, sleep and recover
  • Exercise daily (walking and cycling mainly) and getting in to nature
  • Writing down my experiences
  • Having a project (in my case, this website)
  • A fantastic medical team (Oncologist, Breast Surgeon, Plastic Surgeon, GP, natural health therapists and excellent Nurses).

My tips to others:

  • Take good friends and family to appointments with you. The appointments are just easier that way.
  • Also have headphones and a book with you (so you can stay relaxed and not too involved with other things taking place in the chemo ward).
  • If blood tests are difficult (i.e. like me, veins are hard to find), have the blood test done on the chemo day once they put in the canula (get to your appointment much earlier for that and let the Nurses know in advance).
  • Take as much time as you need or practical to recover and get yourself back
  • Accept support from others, and especially accept laughter and fun outings
  • Create a ball of positivity around you while you are ill, going through treatments and recovering. It is important to stay as positive as possible and reduce all stressors around you so you can heal ‘you’
  • Stop people when they start to tell you negative or depressing stories about cancer. There are many positive survival stories out there (the other stories are important but this is not the time to hear all the stories that don’t have happy endings.
  • Cancer retreats have been a wonderful focus for me.

Chemo and Herceptin Diary 7 January 2012

Herceptin #7 of #17

I have had a milestone. I think my hair has stopped falling out.

I had Herceptin on Thursday.  The hospital was a bit full as staff had been on holiday on Monday and Tuesday. So 30 minutes of Herceptin took 1.5 hours.  But it was not their fault and it went okay.  A friend came with me and that made it an okay day :).

Afterwards, I felt tired and like I had a cold.  Just run down and a bit weak with bleeding noses and slightly numb hands and feet.

But I am overall feeling a lot better, especially with that hormone therapy out of my system.  I still can’t sleep well but I am hopeful for an improvement soon.

Chemo and Herceptin Diary 2 January 2011

Happy New Year

Well I am starting to feel better and better.  I think the chemo is out of my system but there are side effects lingering though…my hair is continuing to fall out and my scalp, still tender.  My nose is bleeding off and on and I have headaches quite often too.

Xmas tired me right out so I have spent days resting but have been able to bike or walk most days. I also still get tired and need to rest for probably half the day.  I don’t seem to be able to tolerate much additional stress.  I can usually do a short outing plus exercise each day.

Sleep is probably my biggest bug bear (that I can’t sleep well).

I think the Herceptin is continuing to cause nerve damage in my fingers and feet.  I have my 7th Herceptin cycle this week. [Read more…]

Herceptin and HER2 Positive Breast Cancer

Not all breast cancers are the same.  There are many types and characteristics of breast cancer.  Some breast cancer is HER2 positive(the rest are called HER2 negative). 

HER2 positive breast cancer is a breast cancer that tests positive for a protein called human epidermal growth factor receptor 2 (HER2), which promotes the growth of cancer cells. In about 20 per cent of breast cancers, the cancer cells make an excess of HER2 due to a gene mutation. This gene mutation and the elevated levels of HER2 that it causes can occur in many types of cancer, not just breast cancer.

HER2+ breast cancer is different

HER2+ breast cancer cells have more HER2 than normal breast cells:

  • Having too many HER2 receptors may make the cancer cells grow and divide faster, creating more HER2+ cancer cells
  • HER2+ breast cancer is considered aggressive because it grows and spreads quickly.  HER2+ breast cancers tend to be more aggressive than other types of breast cancer. They’re also less responsive to hormone treatment.

However, treatments that specifically target HER2 are very effective. [Read more…]

20 February 2007

  • My colleague Marion talked to me about a Herceptin fundraising idea at work. I was blown away as $67,000 is a lot of money to raise for Herceptin.
  • Went to dinner with Philippa – she flew up to see me. Told me to look after myself.
  • Realised that I can’t do the Herceptin Heroes thing. I need to have the energy for myself not fundraising.
  • Mum told me that the family would provide some  of my Herceptin funds