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……..

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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.

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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.

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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.

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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….

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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.

 

A trip of contemplation….

A much needed trip this morning. So I could clear my head ready for the next post I am going to write.

Why you may ask, well it will enable me to make my mind up on what direction I take with the medication suggested the other day.

Sun was shining, so a trip to the beach was called for.

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We went nice and early as I can not bear crowds of people. I am one of these sad people who go on a rainy day just so that I dont have to bump in to anyone else.

As it is I was really chilled out. If I am not panicking over crowds then I am there and wanting to come away. Today, I couldn’t have cared less (now this may have had something to do with the Inositol I have started taking, what is this you may ask?…Well give this a read …Sophie Vaughan Blog….see what you think, so far so good here, I feel a heap more calm)

This isn’t a wordy post, simply pictures of us…..

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Generic “We were here writing” 🙂

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My ugly mug 🙂

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We have air between the feet and the ground!

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Sand Castle’s 🙂

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A crab shell, my find, although the kids weren’t impressed 🙁

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Rock collecting ……

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Just having fun…..I love this lot…..x

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Oh, in case you were going to ask, my head is clear xxxx