Double whammy update

I know you don't want people feeling sorry for you Tinalay but thats is a mountain of awfulness for you and your family. It shouldn't happen to anyone let alone someone who has kept alight the candle of hope for so many on here. Let's just wait and see whats on offer, I hate some of these little homilies that we use on here but some are meaningful. Where there is life there is hope has got to apply in this case. I have started to waffle so I will stop now.

Thinking about your poor brother as well. Xxxx

Hi Tinalay, It is very upsetting when you think you are on some miracle cure and you have such bad side effects. I am pleased to read you have managed to get the pain under control, at least that's something positive.  You are right about medication to help with side effects having their own side effects but it just all depends on how bad they are, whether or not you could tolerate it. When you see or speak to your Consultant on Thursday, it is better to go armed with all your questions written down, so you don't forget anything. I wonder if it would be possible to reduce the dose of Capecitabin and maybe have planned breaks while taking it for a longer time, or is there another drug they have in mind? Only when you have ALL the options, and I hope you have a few, can you make an informed decision about what comes next. Also depending on how you get on with your Consultant what about a second opinion! The main thing is to HAVE options!

Regarding your brother, at least they have offered him chemo, although it may be aggressive, it gives hope. My brother had just had his birthday (early 40's) when he was diagnosed with the same cancer I have Malignant Melanoma but at that time, they could offer nothing in way of treatment, he died within 9 weeks. However things have changed a lot since then and there are new treatments giving people extra months and indeed years. There are new drugs on the market every month or so, so if you both hang in there, I'm hoping the right one will be found for you both!

I will keep you both in my thoughts and prayers. It can't do any harm!

Oh 

If I were there I would wrap my arms around you and have a good cry. I know that you don't want sympathy but my goodness you're stuck between a rock and a hard place-chemo which is ripping your body apart and steroids or stronger medication that would have unearthly side effects. I hope your consultant can search for some other treatment that would give you hope dear Tinalay. 

Your hair etc are growing back, yay! and your pain management is under control. Now there I am jealous, my day is full of pain, sometimes excruciating that I feel like crying but I can't let my son and wife be shocked or upset. They tell me not to do anything just sit back and watch but that isn't going to happen. For you to have pain that resembles walking on broken glass is just horrendous. Beyond comprehension. 

Please pass on my best wishes and hope for your brother that his aggressive chemo gives him a successful outcome.

Good luck for Thursday

Tvman xx

Thank you for your good wishes Norberry you're absolutely right. I remember a post from another member "there is still no cure for cancer. Thankfully there is no cure for hope either"

xx

Thank you for your good wishes anndanv and the advice to write everything down before I see my Consultant. When she  ask how I am my mind goes always goes blank and I say 'absolutely fine'

I'm so sorry about your brother. People say lightening doesn't strike twice, but in my experience lightening always strikes twice! My brothers Consultant certainly doesn't beat around the bush, he said "6 out of 10 people with your results die within a year, so let's assume you're one of the other 4." Things really are changing all the time, some of this group have has great success with trial drugs at the 11th hour.

xx

tvman a hug and a good cry sound wonderful! Looks like we're all going to have to wait a bit longer for those hugs though...

I had many years of being an insomniac, but the medication I'm on in the evening knocks me out which is a blessing. I know it's pain than keeps you night owls up, you and anndanv both suffer from intractable nerve pain which seems to be the hardest to manage. The medication for that type of pain has really awful side effects. Keeping busy is good for your mental health but it must be very challenging when the activities you enjoy the most also cause such pain.

I think we all hide the worst of our struggles from family and friends, so it's a relief to be able to share them here.

xx

Hi Tinalay, I'm pleased to hear you seem in good spirits before Thursday which is half the battle sometimes!!  You are of course right that we all shield our family as much as we can from how we really feel and how much pain we suffer. Yes it is good to have others around who just "get it!".

I did mean to put this on my last reply to you and for anyone who is having hair thinning or hair just growing back problems. My hair got so thin you could see almost all of my scalp and from a distance I looked like I had no hair because I am fair. The Specialist Hairdresser in my local Maggie Centre advised me to use Plantar 39 shampoo (made by Kerastase). Although it is about £10 a bottle, you don't need much per wash. I now only use it once a month and ordinary shampoo in between times!

sending a big virtual ((HUG)) for Thursday!

I was told this to by my gp nurse.My daughter bought me one from the Lush shop it’s got a lovely smell and doesn’t make my scall itch.Let you know hoe it grows.

Thank you Annette for the plantar 39 advice which I have been using for a few months now since you suggested it and itcertainly seems  to help a bit . I can still see bits of scalp myself but it is not too noticeable.mi also dye my hair dark and that seems to help as the grey hair makes the baldness show more for some reason.

I seem to be stabilising a bit on this new drug. I have brain lung and liver mets and the pain is controlled quite well. I’m sorry you still have pain and can’t sleep at night.  I have a scan which will show more which I am due in February. I hope they don’t take me off the drug as I feel well and able to do most things and can walk reasonable distances.

the preliminary results of the phase 2 trial of this drug has shown over 50 % of people had stabilisation of their disease and the main side effects were dry lips and slight headaches and it is tolerated well.

It is good to have some good news with the rise in numbers of Covid.

my husband is panicking about it.

we don’t go anywhere except for walks when meet my daughter outside. He is panicking about me collecting my medication from the GP and the hospital. I feel safe wearing a mask and they are behind a screen I haven’t caught it yet. We get all shopping on line. We should both get the vaccine by February and our daughter gets married in May 

love Ruth xx

Dear Tinalay you have a lot going on at the moment, and it's now January which can be a bit grim. Oh, and there is Covid too. I am sorry that Cape didn't suit you. How is your brother coping? X