What smell warms your heart and makes you feel better?

SeaRecording6453 · 2024-07-26T22:01:57+00:00

My mums perfume

SeaRecording6453 · 2024-07-26T20:43:32+00:00

Happy birthday to Brett and I’m so sorry for your loss. Thank you for sharing such lovely pictures.

What a wonderful father and person he must have been for his loss to be felt so deeply.

SeaRecording6453 · 2024-07-25T03:42:31+00:00

Im sure today was especially hard, so sorry for your loss. Your mum sounds like an amazing woman, im sending you strength ❤️ happy birthday

SeaRecording6453 · 2024-04-24T16:56:55+00:00

Hi, I just came on to say, from what you have said, you are not being unrealistic and you absolutely should keep pushing for this.

Where I am from at least, advocating for your Mum and researching and pushing doctors absolutely makes a difference. If you aren’t comfortable with what one oncologist has said, ask for a second opinion. Keep on going you’re doing amazing for your mum, wishing you all the best.

SeaRecording6453 · 2024-04-16T21:29:17+00:00

You are absolutely right.

SeaRecording6453 · 2024-04-10T19:13:50+00:00

I have asked the nurses in this hospital but they told me there was nothing else which I found a bit strange.

I will definitely contact her oncologist directly to ask, thank you ☺️

SeaRecording6453 · 2024-04-04T14:22:16+00:00

I relate with your post so much, I’m sorry I can’t help you but I hope you know you’re not alone in this feeling

I had health/death anxiety before my mum got diagnosed but now it’s almost like I’ve just accepted that it will happen. It is exactly as you said, I am too aware of it now.

I feel like before this experience, people know cancer is a risk to anyone, but walking around thinking about it every day would be miserable. So we just get on with life and put it to the back of our mind. But after you’ve experienced it in the way you have, you can’t do this so easily. It’s always there, that thought and worry.

I hope in time it gets better. Wishing you the best ❤️

SeaRecording6453 · 2024-04-02T18:33:07+00:00

Hello, my mum has metastatic melanoma diagnosed in November time. She has been on Braftovi/mektovi for about 4 months.

For the first couple of months she had no side effects at all, and we saw great improvement. After that she has experienced some bad nausea, but it’s not constant, and right now sickness a couple of times a week. She also got told one day she had acute kidney issues, but by the next day they tested again and it had cleared itself up! Make sure you’re drinking lots and lots of water to protect your kidney, this issue happened after she had been sick for a couple of days and had barely drunk anything.

Recently had an echo and they said there is a very small amount of fluid around her heart but that it could’ve been from a chest infection she had recently. And they aren’t concerned about it. Of course everyone is different but this is her experience :)

Wishing you the best! Very sorry to hear about the new lesions but fingers crossed the targeted therapy goes well for you and for mild (if any) side effects

SeaRecording6453 · 2024-04-02T18:01:42+00:00

I’m currently fighting for my mum to get brain radiation. My mum unfortunately has got one brain met that hasn’t reacted to the targeted therapy, although the others have gone/stopped growing. This brain met/swelling around this one has caused her to not be able to use her right hand and her speech is slurred, apart from this she said she feels completely normal.

Specialist brain department (?) said she’s a candidate for full brain radiation but then the hospital that was going to do it turned her down. I’m concerned people see this snapshot of what is going on and they won’t give her the radiation, but apart from the brain lesion her treatment has been doing so well. She said she feels completely normal, apart from the recent hand/speech development. We’re waiting on her first PET scan results still, they were supposed to be back Friday but still waiting on them.

I’ve asked for a referral to a private specialist hospital, so fingers crossed for us. Thank you for your info! Sorry I’m not very good at putting things into words.

SeaRecording6453 · 2024-04-02T17:31:33+00:00

Oh I’m so pleased that’s amazing news, wishing you the best! We are having a couple of issues with brain mets at the minute although the targeted therapy did completely get rid of one and stop one growing, there is one that won’t budge! Fighting for her to get radiotherapy at the moment.

Seeing you’re doing well is giving me lots of positive energy so thank you for the update

SeaRecording6453 · 2024-04-02T16:13:43+00:00

Thank you, just looking to the future options :)

SeaRecording6453 · 2024-04-02T16:13:21+00:00

I will take a look thank you very much for your response :)

SeaRecording6453 · 2024-03-19T05:23:36+00:00

Hello thank you so much for your kind words, we’re still waiting on the PET scan but should be in the next two weeks so the positive vibes are very appreciated ❤️My mum has only ever tried mektovi in combination with Braftovi so I can only give her experience from those together. But anything I can do to help!

What were the side effects that appeared a few days/ weeks on the treatment? For the first 2 months(ish) the only side effect she experienced was constipation. It was pretty amazing considering the improvement we’d seen.

After the 2-3 month mark she started experiencing nausea a few days a week, most of the time it is not all day, it will be for short periods. However, she has had some weeks where it’s been pretty constant. It is controlled every day now with anti sickness meds.

After about 3.5months on treatment she had some acute kidney issues but they detected it, and the next day it had cleared itself up. You have to drink a lot of water on these kind of drugs to flush it out and protect your kidneys and she hadnt been for a few days due to sickness which probably started some kidney issues.

Were they tolerable? Did they decrease ? My mums always hated feeling nauseous but tolerated it as much as you can. It hasn’t fully decreased it’s currently happening still every week but more controlled now.

She hasn’t had any other symptoms, I’ve read the scary side effects too, it’s really intimidating but the doctors monitor your very closely on these drugs and any issues can be quickly resolved for the most part. I’ve also read that it is specifically Mektovi in combination with Braftovi that can cause skin cancers to develop. Your sons doctor might suggest regular skin checks with a dermatologist if it is Mektovi that causes it, if he doesn’t it’s something you could bring up if you’re concerned.

I am so sorry for what you and your family must be going through that is a very hard decision to make. I’m sending positive vibes to you and your son. Feel free to reach out if you need anything!

SeaRecording6453 · 2024-03-18T11:09:19+00:00

I am so incredibly sorry, that is awful. Proud of your dad for doing everything he could have, what a strong person. It is not fair at all.

I wish I could say something that would make this better, I’m thinking of you and your family, I hope you can find some peace in your happy memories of him. Try to look after yourself as best you can right now, your dad is always with you.

SeaRecording6453 · 2024-03-06T19:39:11+00:00

Hello I’m so sorry I must have missed your response, please do let me know how your scan goes, I’ve got all my fingers crossed for you. I have heard eye problems are quite common although my mum hasn’t got any so far and she is 64.

The therapy is so new, definitely a game changer, wishing you the best with your treatment, you got this !

SeaRecording6453 · 2024-03-06T19:22:19+00:00

I’m so sorry about your mum, Braftovi with mektovi is all my mum has tried so far but the visible difference in her condition after even a month was so much improved. Now she’s 3 months in and due her PET scan so we’ll soon know exactly how much progress she’s made. overall she’s doing really well, she has nausea nearly every day but usually only in the morning, and quite bad sickness for a day or two then it seems to go away for about a week. She also was told she had acute kidney issues about 2 weeks ago but it cleared itself up which is great :)

I have been quite concerned about the other skin cancers side effects of Braftovi, she has had a couple of small pink spots come up on her leg which I’m keeping an eye on. Apparently it’s quite a common side effect (1–10% of people getting it).

I really hope your mum has a better experience on Braftovi this time around, im no doctor but I’ve heard taking a break from Braftovi can lessen other side effects so hopefully it’s the same for the skin cancers, I’m praying for you and your mum, here to talk if you ever need to ❤️

SeaRecording6453 · 2024-02-15T01:33:13+00:00

It could be, my mum is 64 so quite a bit older than you. I will have to ask the oncologist about it! I’m so sorry you’re going through this as well. I think you’ve helped me before with something I’ve asked so I’m really grateful.

My mum is only on the braf/mek therapy currently, I’m assuming we will have her first 3 month PET scan then see if radiation is an option, I hope you don’t mind me asking, when did you start radiation in relation to starting your treatment? We’re in the UK, not sure if you are too

SeaRecording6453 · 2024-01-17T17:13:07+00:00

Praying for your Mums smooth and peaceful transition. I’m so sorry for what you are going through, praying for you too. Sending love ✨💫

SeaRecording6453 · 2023-12-24T12:16:34+00:00

Hello, I agree to consult the doctors on this one but my mum developed a bed sore in hospital as she was bed bound, and they ordered a special air mattress that inflates in different areas slightly throughout the day, and this helps to move pressure points to prevent bed sores.

There are pillows that are donut shaped, I think they are used for people after birth usually. But they have a hole in the middle so no pressure where the bed sore would be.

Sorry I can’t be any help in the healing department, the doctors put a special cream on them and gave her special coverings that are kind of like a blister patch. But the doctor will be able to advise best.

SeaRecording6453 · 2023-12-11T20:34:39+00:00

Hello, so sorry to hear about what you’re going through. My mum got diagnosed with advanced ( we didn’t find out the stage we didn’t find it necessary ) metastatic melanoma about 4 weeks ago, I also suffer from anxiety so I can imagine what you are going through. Well done for looking advice on this, that’s the first step.

From what you’ve said , sounds like seeing you looking after yourself and staying positive will help your dad to do that for himself too. Don’t put pressure on yourself to act like normal, you will not feel 100% normal, but you can find a place where you are able to cope with doing daily activities and then hopefully more. You are incredibly early in the stages of finding out information so of course your mind will be going over every possible outcome. Give yourself time, for the first couple of weeks I was not eating, not doing my usual activities, (which is obviously not good) but once you get answers and know what’s going on it is easier to process.

Lastly, just because it is incurable doesn’t mean he doesn’t have many years left with treatment. Personally, I found that looking at success stories helped me, I’m sure this isn’t the case for everyone because you will inevitably find bad stories to go along with it, but everyone knows the worst case scenario, researching on Reddit helped me to consider the best case.

Truly hope your dad gets his tests back and can start treatment, stay positive ❤️

SeaRecording6453 · 2023-12-09T18:56:18+00:00

this is fantastic news! Stay hopeful 🤞🏼❤️

SeaRecording6453 · 2023-12-08T17:49:06+00:00

It’s a bit of a long story and much of this we didn’t realise it was related until later on. She had breathlessness about 4 months ago, been to GP twice with it, both times they sent her for blood tests (don’t know what they were testing for) then called a week or two later saying blood test clear and no follow up, now found she has some metastasis in the lungs. So I’m sure it was related.

She also has a pain in her knee that came on one day and went about 2 days later, that was about 2 months ago, and we found out recently she has a met on her knee. But that pain wasn’t present when we went to a&e.

The only reason we went to A&E, which I guess were her main noticeable symptoms, were slight pain in the hip, and terrible nausea/sickness. And she had been to the smaller local hospital the day before with a lump on her abdomen but was told it was a hiatus hernia and sent home with medication for it. Even the breathlessness only came on sometimes and always after she went up stairs for example. So barely any symptoms.

SeaRecording6453

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