Back 2 Life….

england

My holiday is officially over and I am back to the keyboard to type it all up for you.

The last few weeks have been manic and I have so much to tell you, share and get your opinion on.

First and foremost I would like to update you on the Gorlins Syndrome stuff.

As you are all aware I have been advised to try the Erivedge Treatment. Anyone who likes my Facebook page will also be aware of the dilemma I faced a few weeks ago, however for those of you that don’t here is the dilemma I faced….

After deciding on a start date to commence the Erivedge Treatment I received to letters in the post. One was the confirmation from the Northern Centre for Cancer Care to confirm that I was indeed embarking on the Erivedge Treatment and the other was from the University Hospital of North Durham with a date for surgery to remove the BCC’s I currently have.

Now the dilemma comes from the fact that I want to get rid of the BCC’s I currently have, yes the Erivedge course may get rid of them but it could be months. When I get a BCC my mind takes over and I am not settled until it is gone. Here I am with 6+ and I have the opportunity to get rid of them, but I also have the opportunity to keep them at bay.

After consulting my Gorlins friends I decided that I would ask the team at the Freeman Hospital if they would be happy for me to have the surgery to remove the growths I currently have and then embark on the journey they are offering as a preventative rather than a cure.

Phone call made I awaited a reply and to my great relief my Oncologist is more than happy for me to do this.

Decision made I also decided that if I am going to start from scratch with no BCC’s it is vitally important that I uncover the areas that are hiding at least two BCC’s and get rid of this hair. As you all know the chances of me losing it when I start the treatment are high so I figure lets do this thing properly. Hair off before my pre consult for surgery and fingers crossed all the BCC’s are removed in one fell swoop.

How am I feeling? Well I am relieved to not be in two minds of which direction to take. I have been given the chance to take both options and that’s great. Not looking forward to the surgery, but then who would be? Also, I am apprehensive about the next new step. I am not a fan of new things, creature of habit springs to mind. All I can do is go with the flow and not worry about things I can’t control.

Anyway on a happier note, what have I got coming up over the next week for you to read about?

We have been so busy with days here, there and everywhere. Here are a few teasers for you:

Girly Night’s…..

girly nights

Date Night….

date night

Impromptu Family Day….

impromptu family day

Libby’s First Football Match…..

footy

Results Day….

gcse1

The Journey Across the Border….

border

Haven Holiday…..

haven holiday

Zoo Adventures…..

zoo

Kids in the Kitchen…..

cake

Nothing beats a cup of tea….

tea

I also have a few books to review for you, I will hopefully have an update on my college adventure for you (what a nightmare that is proving to be, yet again), a list of hospital visits and some exciting things coming up this week to also tell you about.

Thank you for reading and I do hope you enjoy what I have to come over the next few days….

For now…

Mwah

xxxxxx

Update x

Its been a long old week, well maybe a little longer than a week…..

I didn’t want to bore you with my treatment waffle. (For all I find a lot of comfort in what I type, there is only so much of my rational and irrational thinking that is worth reading, I save that for annoying Mark with).

I simply have not had much focus on anything else other than the take it or leave thoughts that were flowing through my mind.

What have we been up to sine my girly shopping day last week?

Well this happened……..

update update1

Not the most interesting of things, agreed, but we have been promising ourselves new living room flooring for as long as I can remember. There has been some serious long term saving going on for it and finally it is down.

What else…..?

Well I have booked up to go to Edinburgh Zoo while we are on holiday later in the year.

update2

Not the first time we have been but its the first time all the kids will have been and it will be nice to have them at an age where they all remember going.

They are all very excited about the Monkeys. Lions and Penguins ……oooh and of course the Panda’s.

update5

Then is the point we hit ….”Mam. I’m bored” GRRRRRRRRR

We have had a group discussion of what the kids would like to do and they have told me games (got loads of them), craft things (working on that one), Reading (Amazing idea) and a Baking Day.

With a little help from me Libby has discovered paper back “Proper” reading books.

We came across the My Little Pony books the other day and bought her ……… It took her 2 days to finish it but 16 chapters and she is done and desperate to read some more. So, while out today I invested in …….for her.

update3

Seeing her reading has really got my interest for reading up again. I love a good book, but it has to tickle me. I loved reading just like the kids when I was at school but when I left the interest just fell. I love a good book, its finding the right one.

That leaves me with the mission of finding me something good to read, some good series for Libby to pick up on and something that is age appropriate for Regan. (Next post)

A Baking day is on the cards for the week after next.

(If you have any suggestions of books, baking ideas and/or cheap/free things to do then please feel free to comment)

update4

Then of course we had hospital on Tuesday.

If you haven’t read my previous post, Too Erivedge or Not??? , then have a quick read. ( I will let you catch up 🙂 )

Right, well I had my questions ready and these are the answers I got…

  • What are the most common side effects within the patients that are already taking it in their care?

    I asked this question and was told that most patients with side effects will get a degree of muscle spasms, hair loss and appetite issues. Mark asked how many patients they currently had who were experiencing no side effects what so ever. To this she replied, we do have patients who have no side effects, in fact there are a few.

  • How many patients have stopped taking it because of the side effects? (Bearing in mind the words used by CR UK are “You keep taking the treatment until it stops working or the side effects become too great.”

    Quite a few, but then those that persevere find that the side effects become less extreme over time.

  • Is it going to interfere with me starting college and working? (I have less concern about work than college as I work from home and have an amazing employer)

    I am likely to suffer fatigue, but if I structure and routine my days then this can be managed

  • Will it have a knock on effect in every part of my life?

    Until I start taking them there is no way of knowing, each patient is different, only time will tell.

  • If/When I stop taking it, will it mean I am more prone to cancer than I was before taking it?

    It is specifically aimed at BCC growth, and there is no evidence to suggest that this is the case.

  • Will it mean that my growths increase in growth speed?

    There is no evidence to suggest that this would happen.

The other question I had was, “Can I start when the kids are back at school?”, I am very thankful that the answer was “yes”.

The paperwork was signed, the vampires stole some blood and I return at the beginning of September to collect the drugs.

I can’t say I am 100% convinced by the whole thing but then I fear any new treatment or procedure. Then I guess that is only natural, fear is a good sign, means I am human, well at least that is what I am told.

xxxxx

Too Erivedge or not??

 

Here goes nothing…..

If you have read the Freeman Visit post you have more than likely clicked the link to see what the side effects of Erivedge are. However if you haven’t this is the list according to Cancer Research UK….

erivedge

Common side effects

More than 10 in every 100 people have one or more of these side effects.

  • Taste changes or loss of taste happen in more than half of people

  • Muscle spasms affect 7 out of 10 people (70%)

  • Hair loss

  • Loss of weight occurs in about half of people (50%)

  • Tiredness affects 4 in 10 people (40%) during and after treatment. Most people find their energy levels are back to normal within 6 months to a year  

  • Diarrhoea happens in 3 out of 10 people (30%). Drink plenty of water. Tell your doctor or nurse if you are worried about how bad it is or if it continues for more than 3 days  

  • Feeling or being sick happens in about 3 out of every 10 people (30%). This is usually well controlled with anti sickness medicines but tell your doctor or nurse if you feel sick

  • Loss of appetite happens in a quarter of people (25%)

  • Constipation affects 2 out of 10 people (20%). Your doctor or nurse may give you medicines to help prevent this but tell them if you are constipated for more than 3 days

  • Aching joints or joint pains affect around 1 out of 10 people (10%)

  • Itching

  • Changes to your periods – if you haven’t had your menopause your periods may become irregular. Some women find that their periods stop

  • Loss of fertility – you may not be able to become pregnant or father a child after having this treatment. Talk to your doctor before starting treatment if you think you will want to have a baby in the future

Occasional side effects

Between 1 and 10 in every 100 people have one or more of these side effects.

  • Feeling weak

  • Changes in your liver that are mild and unlikely to cause symptoms. The liver will almost certainly go back to normal when treatment is finished. You will have regular blood tests to check how well your liver is working

  • Loss of water from the body (dehydration)

  • Indigestion

  • You may have low levels of sodium in your blood, which will almost certainly go back to normal when treatment ends. You will have regular blood tests to check the levels

  • Stomach pain

  • Skin changes such as a rash, which may be itchy

  • Eye lash loss

  • Back pain and chest pain

  • Non harmful skin cancers called squamous cell cancers happen in some people – let your doctor know if you notice any skin changes

(http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/vismodegib-erivedge/vismodegib-erivedge#common)

Silhouette of a man in a business suit giving a shrug with a question mark

Here we have it….my head is battered but after our trip this morning I have pretty much made the decision to give it a go.

There are pros and cons to the treatment obviously, the cons are pretty clear to be seen above and although there is a chance that I will not experience these side effects, however, this is me we are talking about.

The pro’s….Well I could have a serious reduction in the growths I get, the ones I have could shrink, and growth of any more may stop….as long as I am taking the treatment.

The con’s…. Well the obvious side effects. I can cope with hair loss (I don’t have a lot to start with), the weight loss (got plenty of that too lose), the loss of fertility (we ain’t having any more anyway) and then there is the fatigue, the nausea, the loss of appetite, the possible liver damage meaning that I will not be able to have a drink in the time that I am taking them (some may see this as a pro, going tee total will do me no harm that is for sure); the list as you have read does go on.

question

I have to ask these questions….

  • What are the most common side effects within the patients that are already taking it in their care?

  • How many patients have stopped taking it because of the side effects? (Bearing in mind the words used by CR UK are “You keep taking the treatment until it stops working or the side effects become too great.”

  • Is it going to interfere with me starting college and working? (I have less concern about work than college as I work from home and have an amazing employer)

  • Will it have a knock on effect in every part of my life?

  • If/When I stop taking it, will it mean I am more prone to cancer than I was before taking it?

  • Will it mean that my growths increase in growth speed?

If I think of any more I will add them but these are the pressing ones at the minute.

Ultimately though it will not mean surgery for the next nine months, but then there is the question of, do I want to have a possible nine months of side effects, when I could have surgery and they will be removed and I will be pain free two weeks after? But then I will have to do it again in four to five months time.

yes or no

You see my dilemma, I have done the reading, I have done the research, I now just have to make that yes or no decision…..I am back on the second of August. One thing I do know though is that I would prefer to start them after our holiday, if it is at all possible.