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.

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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.

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.

 

Freeman Visit

hospital 2

I must apologise for being so quiet the last couple of days.

Posts have been written but to be honest I am not happy with any of them. Mainly I think because today’s appointment was playing on my mind.

I have not had time to dread this appointment as it only came through about a week ago, although I knew it was on its way I am grateful it was so quick, that way I didn’t have chance to talk myself out of it.

While visiting the specialist dermatologist over at the RVI a few weeks ago he advised that a chat with the Professor over at the Cancer Unit may be of benefit to Mark and I to discuss non surgical options.

Now all well and good you may say, and yes it is, but I have one major issue that I need to overcome every time I go.

I have to face REALITY, something I struggle with massively at the best of times when it comes to admitting that I am indeed, a Cancer Patient. Now there is nothing to be ashamed about, not at all, but I feel like a fraud when I rock up and there are so many poorly people there and me.

IMG_0312

Enough waffling and lets get on with what happened….

We had a very long drive there this morning, there had been two accidents on the A1,one north bound and one south bound, so we took the scenic route up.

hospital

I would be lying to say I don’t enjoy the ride up there, love to see the angel and St James Park shining in all their glory.

hospital 1

We arrived and made our way to The Northern Centre for Cancer Care.

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We truly are blessed to have such amazing medical care in the North East. The hospitals I attend are amazing and the unit at the Freeman is outstanding in its field.

Mark, Regan and Penny came too.

Mark being there is vitally important to me. He asks the questions I am simply afraid to ask, or the questions that I don’t think of. He takes some of what is being said in and I take the rest, so between us when we come out we can piece together what was said.

Like I say today was about deciding if there was anything that could be done other than surgery.

Prior to attending today I knew of three treatments that I expected to be mentioned today. These are:

Aldara Cream

This is a topical treatment that is applied to the BCC over a space of days, it basically uses the bodies own defence system to attack the cancer cells, which in turn may get rid of the growth.

Cancer Research UK

Acetretin

This is similar to Vitamin A, it encourages the abnormal cells to turn mature in to normal cells. This is generally administered in tablet form and has a good record of reducing the amount off BCC’s Gorlins patients get.

Cancer Reasearch UK

Vismodegib (Erivedge)

This oral drug is aimed at blocking the signals that cause a cancers rapid growth. It is classed a cancer blocker.

Cancer Research UK

Before I tell you about today, let me share this with you:

Almost three years ago,  I was invited to do an  interview for ITV Regional News,  when the latter drug was licensed for use within patients like myself. So I had a good idea as to what the drug did and what the medicating process entailed.

hospital 5

In we went, sat in the waiting room at least somebody was having fun. She brightened up a few of the peoples days though, being her usual charming self.

We had to wait a bit but we got seen pretty quickly.

hospital 6

As expected she asked me to go over my story, which I did. You have heard that one before so I won’t go in to detail.

She looked over me and agreed that the current batch of BCC’s showed all the traits.

Then came the nitty gritty bit.

“So the reason the Dermatologist has referred you to us is to discuss the use of Erivedge as a long term treatment.”

Hmm, now I will go in to the pros, cons and potential side effects in a post for you tomorrow. (This being because it is a post in its own right, the list is long)

Mark and I have talked long and hard about this drug, it does potentially bear side effects similar to chemotherapy. It is a long term drug that I would have to take for at least nine months, or in the words of Cancer Research UK “You keep taking the treatment until it stops working or the side effects become too great.”

But the results are good, they speak for themselves. It does stop the growth, it does reduce the size of current growths and it works.

We questioned the long term.

“This is a new drug and they do only have the records going back 6/7 years. So far all the side effects subside after taking of the drug ceases. There is no evidence of any other long term effects but then how would they know.”

We also questioned how many patients with Gorlins they currently had taking the drug

“Three or Four was the reply, but then that is good as there aren’t that many of us.”

The doctor left the room and we had a brief discussion and more or less agreed that it is worth a shot. However we would look over the information and come back to her with an answer as soon as possible.

She returned armed with information from the Cancer Research UK site in her arms.

I spoke to her explaining that I would like to give it some consideration and could we make another appointment. She was more than happy to do that and I return in two weeks. If I decide to go ahead then they will take blood tests, and will do so every 4 weeks, I will need to return to the Freeman for observation on a regular basis and I would not be able to have surgery for six too nine months so they could assess the success of the treatment.

hospital 4

So here we are, I have the information, I have the pro’s and con’s and I am developing a list of questions.

I will share these with you in my next post. It would seem that putting this down in type is helping me to open up. Strange way to put it but it’s a kind of therapy for me I think. Getting it all out there for other people to read and understand is my way of talking about it.

I thank you for reading and I thank you for your support…..tomorrow is another day …….xxxxx