scanxiety …

… be gone!!

SCNX

After managing to convince myself that both my bone and lung metastases had progressed, my PET CT scan was good.

This is something that neither Dr. Shaheenah or I were expecting given the levels of pain I have been experiencing in my back, hips and legs over the past two weeks.

I cannot actually begin to tell you how relieved I was to walk into Dr Shaheenah’s office and see her smiling at me, always a good thing!!

Briefly, one of the bone metastases on my lower spine as completely resolved itself and the remaining metastases in my lungs and lymph nodes are all showing lower levels of activity. The only negative on the scan is that fact that I have developed a pleural effusion on my right lung. This is a collection of fluid that forms in the lining of the lung. Dr Shaheenah is not too concerned and thinks it may be linked to all the steroids I have had to take.

I will continue on with my current chemotherapy protocol of Navelbine and 5FU aka Sid for another two cycles and then, at the end of April, we will do another PET CT scan to assess progress.

Now on to other things …

Princess Fiona has now been replaced by Dr. Evil … the high doses of steroids that I have had to take over the last eight weeks have really taken their toll. I have turned into a giant puffball and am a dead ringer for Dr Evil. Aside to being swollen and puffy, I have experienced a large amount of muscle weakness, this is likely to be why I have been in so much pain. I struggle to stand up or stand for too long and walking even a short distance has become a problem – the wheelchair has had to make an appearance again but, hopefully this will not be for too long.

I have nearly weaned myself off the steroids but it is likely to take another three to four weeks before my body starts getting back to normal. Can’t even begin to tell you how much I am looking forward to that.

Whole brain radiation has probably been the hardest treatment I have done to date. The actual radiation was not difficult but the side-effects and the recovery has been incredibly hard and there have been a few times in the past few weeks when I’ve just wanted to give up but, luckily, I have had a project to focus on that has really helped take my mind off things now and again.

Project House Move …

Yep, we finally found a new home … a brand new home that suits our needs perfectly.

We have found a lovely, light, bright and airy single storey villa in Mirdif with a lovely private swimming pool. We are going to be moving on the 12th of April and it has been great to have something to keep me busy.

Moving into this villa will make my life so much easier as everything will be on one level and I won’t have to tackle the stairs anymore which have become a real problem for me.

I must admit that the actual move is filling me with a little trepidation but we have a good company coming in to pack up and unpack on the other side and both Jemma and Steve will be around to supervise. I plan to just direct from Command Central!!

We are all super-excited to be moving into such a lovely home and having a fresh start somewhere that will have have such a large impact on my quality of life.

Watch this space for photos once we are in and settled.

Always xx

good news, finally …

So, after a long silence and a lot of swimming, mostly against the tide, we finally got some good news today!!

As some of you know, chemotherapy has been on hold for a couple of weeks as I developed a nasty skin infection around my port which has had to heal properly before the port can be accessed again. This break gave my oncologist a chance to fit in another PET CT scan yesterday to check whether or not the current regime of chemotherapy is working effectively.

My “scanxiety” levels have been off the charts, especially after bad news we had following my PET in September, and as the report was only expected on Sunday, I was expecting to have a few anxious days but, I think the radiologist took mercy on me and I collected the report this afternoon.

The first words to jump off the page at me were “no evidence of new disease”.

AWESOME!!

It got even better though when I read on and saw that lesions in supra clavicular and mediastinal lymph nodes, right lung and bones are showing significant signs of improvement and in most cases, the lesions have shrunk considerably. The lesions around the left lung are proving to be a little more stubborn but are also showing signs of improvement.

AWESOME, AWESOME, AWESOME !!!

This means that the current regime of chemotherapy is doing what it’s supposed to do and, to say that I am absolutely thrilled with the results would be an understatement.

The past two months have probably been the toughest for me so far and, at times, the mountain in front of me has seemed insurmountable but, after today’s good news, I am putting on my big girl panties again and  gearing up to start the next round of chemo on Sunday “fugly” side-effects and all.

As long as the chemo is working, I don’t mind swimming against the tide for a little while longer.

Onwards and upwards x

Back on the rollercoaster …

SO, after not having made a post for a while, I’m afraid that this is going to be another one of “those” posts …

Last week, after completing two cycles of chemotherapy, I had a PET CT scan to check how the cancer was reacting to the treatment. Unfortunately, the results were not what we were hoping for!!

It seems that the beast is proving to be even more difficult to tame than we thought and has now set up home in several new locations in my body. These include metastases on my thyroid, a rib, my right hip and the top of my right femur.

Luckily, the bone lesions are fairly small but my rib has already fractured which is a sign that my bones are quite weak. I’ve been in hospital since Monday as a precaution while the doctors decide what to do to protect my hip and femur. The orthopod has decided that no surgical intervention to strengthen the bone is needed yet which is a relief and, for now, they will treat the lesions with five fractions of radiotherapy. This will start on Sunday and I will have one fraction a day for five days.

I am also going to be given an injection of a drug called Xgeva every six weeks which will help strengthen my bones. This will continue indefinitely.

Most importantly, is a change in the chemo regime. Today, we are starting a new regime made up of two drugs. The first, Cisplatin, is a platinum based chemotherapy (of the same family as mustard gas!!!) and is given once a week for two weeks. The second, also a chemotherapy, is a drug called 5FU (5 Fluorouracil) which is administered continuously for 14 days. 5FU is also known as a “suicide inhibitor” as it literally causes the cancer cells to commit suicide, I kind of like that idea!! What I am not too sure about is the thought of having to carry my “suicide inhibitor” around with me for 14 days … never thought I be making best friends with my chemotherapy!!

Each 14 day cycle is followed by a week’s break and I will have between 6 and 8 cycles with another PET CT after the third cycle to check the response.

I have been warned by Dr S. that these drugs are more toxic than the last chemotherapy and that I should expect the side effects to be worse than those I have experienced before. I am hooked up at the moment and my lovely chemo nurse is just about to start the Cisplatin so I will keep you all updated … right down to the last gruesome detail!!

What I will say is that if I don’t develop some kind of X-Men-like super powers after all these drugs and radiotherapy I will be seriously disappointed.

 

 

Chapter 2 …

On the 1st of June 2016 I was celebrating my last Herceptin treatment and the fact that, after 540 difficult days, I was finally finished my treatment.

I was so looking forward to having my trusty port-o-cath removed, only having to see the oncologist once every two months and finally starting to recover from the fatigue that has been with me since I started chemo way back in January 2016.

At my regular check-up with my oncologist on the 8th of June I mentioned that I was feeling a little short of breath and had developed an irritating cough. I put it down to allergies and she agreed but suggested that we do a  CT-scan. “just to be on the safe side”. My last scan on the 15th of February was crystal clear and as my tumour markers had also been stable for months, she said she wasn’t expecting to find anything untoward but just wanted to “be on the safe side”.

Clearly, we were both wrong as the CT showed some nodules in my chest and some very enlarged and unhappy lymph nodes in my sternum. The lymph nodes are the cause of my breathlessness and cough as they constricting the airways from lungs so they are not able to function at full capacity.

Stunned, pretty much sums up how I felt as the oncologist explained what would come next, a PET CT-scan, biopsies of the nodules and lymph nodes and then, a treatment plan.

I had the PET CT on the 3rd of July and the biopsies on the 5th and they both confirmed that the beast, not content with the havoc it had wreaked before, was back and, only 35 days after finishing my initial treatment, I was diagnosed with secondary breast cancer in my chest and lymph nodes.

To say that I am pissed off that I am right back where I started is an understatement but, I have beaten it once, and am determined to beat it again.

Chemo is due to start on Wednesday, the 20th, but more about that later …

Whenever you find yourself doubting how far you can go, just remember how far you have come, remember everything you have faced, remember all the battles you have won and all the fears you have overcome.