[shropshiremumParticipant]

Hi Jane

I’m on lenalidamide, 7.5mg daily, and I take antihistamines daily, as I experienced hot, itchy skin when I first started to take it.

However, my main problem is the neutropenia. I’ve now got my third bad cold since my son returned to nursery in January. I kept him at home for over a year whilst I was having treatment, but as he starts school in September, it was really important for him to have some time with children his own age, so he went back at the start of the year.

The first two colds lasted about six weeks each, and were accompanied by ear infections. I had a couple of weeks respite in between, but the second one put me in hospital for three days over the Easter holiday. It’s miserable, because I’m now panicking that I’ll get a temperature, and end up in hospital again.

My partner’s in the Navy, and sorting emergency childcare is not straightforward at all. I’m really hoping that I start to build up some immunity, as I don’t want to be battling bugs all the time!

I hope your husband finds a way to manage the side effects. Maybe he could try a different antihistamine? I take loratadine, and it definitely helps.

Best wishes

Susan

[shropshiremumParticipant]

Hi there

I’m also keen to resume travelling, especially as I’ve been cooped up for so long, but I think I’d reiterate what’s just been said. My in-laws went on a skiing holiday a few weeks back, and having avoided it all through the lockdowns, etc, they both went down with it just a few days after their return flight.

I think, for now, I’d personally avoid sitting in an enclosed space for such a long time, as it would be awful to contract it on a flight and spend your holiday feeling ill…

Have you thought about places in the UK you’ve never been? We really do have some gems right on our doorstep. I’ve actually just been awarded early retirement on medical grounds, and we’re going to buy a motorhome, so we can tour the country in comfort (we currently have a small DIY campervan with a basic fold out double bed, a camping stove, and a four year old!!). We’re also hoping to do some trips in Europe eventually…

I’d love to go back to New Zealand to see my best friend (was there in 2006), and would love to take my son to meet his relatives in Canada, but we’ll wait until we feel it’s safe to do so.

[shropshiremumParticipant]

Thanks for the replies.

Unfortunately, I’m under the weather again, as I was just coming out the other side of my first cold a couple of weeks ago, when my son picked up another bug, and within two days I had it too!

I’ve now had this one a couple of weeks and there’s no sign of it going anywhere. Mostly I’m full of snot and am coughing for England, especially at night. My ear still hasn’t quite recovered from the first bug, although I can hear properly now. My sinuses have been very painful, so I’m living on paracetamol.

As an aside, I have a very low eGFR, and have noticed a return of the horrible leg and foot cramps over the last couple of months. I had these before diagnosis, but they went away after my treatment. My Hb has also dropped, so I’m having to increase my epo injections. My kidney nurse did an “Aha!” when we were discussing my Hb, when I told her I’d been ill.

I guess I’m now wondering if it’s the two back to back colds that have affected my Hb and my kidneys? Anyone else had changes to their bloods whilst under the weather?

[shropshiremumParticipant]

Hello

I had this too! It was really, really annoying! A hot itchy scalp that drove me to distraction! But I’m now on antihistamines, and don’t get it at all. I’d suggest if you have some at home, give them a try (although probably phone his CNS first). I take loratadine…
Susan

[shropshiremumParticipant]

Morning.

I’m afraid I can’t remember if I had Dex as well, and there’s no mention of it in my paperwork.

Hope all goes well for your dad.

[shropshiremumParticipant]

Oops, uploading issues!

• This reply was modified 2 years, 9 months ago by  shropshiremum. Reason: Uploaded three times!

[shropshiremumParticipant]

Unfortunately, I suffered terribly with a sore mouth, throat and painful ulcers, so struggled to eat much once the mucositis kicked in. Yogurts were good, and I would mix them with milk to make a milkshake which went down more easily than solid food. I got my partner to buy me an ice machine after the first week or so, as I found the staff were often too busy to keep my jug replenished and even with a fridge in my room, ice was the best way to keep drinks cool. Again, these were more palatable than hot drinks. I also got my partner to bring in fruity ice lollies, which the staff kept in a freezer for me.
Take plenty of reading material, and if possible, a tablet with a decent sized screen to watch stuff on Netflix, iPlayer, etc. When I felt too ill to do much else, I could at least watch the telly.
I second the recommendation for plenty of underwear. Cheap stuff that he won’t care about throwing away. 😉

[shropshiremumParticipant]

Unfortunately, I suffered terribly with a sore mouth, throat and painful ulcers, so struggled to eat much once the mucositis kicked in. Yogurts were good, and I would mix them with milk to make a milkshake which went down more easily than solid food. I got my partner to buy me an ice machine after the first week or so, as I found the staff were often too busy to keep my jug replenished and even with a fridge in my room, ice was the best way to keep drinks cool. Again, these were more palatable than hot drinks. I also got my partner to bring in fruity ice lollies, which the staff kept in a freezer for me.
Take plenty of reading material, and if possible, a tablet with a decent sized screen to watch stuff on Netflix, iPlayer, etc. When I felt too ill to do much else, I could at least watch the telly.
I second the recommendation for plenty of underwear. Cheap stuff that he won’t care about throwing away. 😉

[shropshiremumParticipant]

Hi there

I had my SCT last summer, and it was a very scary thing to go through, but I had an excellent consultant in Birmingham, and he explained how the chances of something going horribly wrong were very, very low. He was very honest about a couple of cases where things hadn’t worked out well, but it was literally two cases in his entire experience.

I have very low kidney function, thanks to the myeloma, so the prospect of ending up on dialysis was very worrying, but I’ve managed to avoid it so far.

I was upset to lose my hair, which was the longest it had ever been due to 18 months of lockdown (way down below my shoulders), but it’s growing back well and I’ve had so many compliments about how short hair suits me, that I’m tempted to keep it short for for a while! It’s really surprised me how different I look, but in a good way.

You have to weigh up the pros and cons. I didn’t enjoy being stuck in hospital for three weeks without any visitors because of covid, and I don’t like the idea of going through it again, should the need arise, but at the end of the day if it gives me more time with my three year old, I would have no choice.

I hope you are able to make a well-informed decision.

Take care.

PS. My sister has also been through a SCT, almost 9 years ago, and ironically I was her donor…

[shropshiremumParticipant]

Hello!

How bizarre! I was literally just thinking about you as I was looking back at our exchange last October! I was going to ask how your kidneys are doing?

Aside from the cold, I’m doing ok. At my last blood test in December my eGFR was about 16%, so still very low, but my consultant wants me to look on the positive side of things. He actually told me that, at diagnosis, he thought I would be on dialysis fairly quickly, but as I’ve managed to stay off it so far, that’s a positive sign.

I’m about to be a ‘single mum’ as my oh is joining a new boat in March, and has a few courses to go on beforehand, but I’ve got overnighters planned with my mum, and my son is back at nursery two days a week, so hopefully we’ll get on ok.

Hope you’re doing ok too.

Susan

[shropshiremumParticipant]

Hello again.

I’ve also had dry skin, although it’s not too bad at the moment.

Another thing that occurred to me, is he on co-trimoxazole? Although I’d taken it before my SCT, I had a reaction to it once I started lenalidamide. Again, red itchy patches. One of my nurses said it’s very common, and to stop taking it (she described it as a ‘belt and braces’ approach, and not essential).

Was he on this too?

Susan

[shropshiremumParticipant]

Hi there.

I had my SCT in July 21. I’m now on my third cycle of lenalidamide, 7.5mg dose, due to kidney damage. I had an allergic reaction where my head, neck and ears got very hot and itchy. I started on antihistamines, which keeps it under control.
You don’t say what kind of reaction your husband had, but were antihistamines an option?

I hope you find a solution.

Susan

[shropshiremumParticipant]

Hi there

It’s good to read that your current treatment has been successful. I was diagnosed in Nov 2020, had six cycles of VTD, then a SCT in July 21. I’ve just finished my second maintenance cycle. I’m on lenalidamide, 7.5mg because my kidneys have been damaged by the myeloma.

Hope you continue to do well!

Susan

[shropshiremumParticipant]

Got one too, as has my sister who had leukemia 9 years ago, and has ongoing health issues…

[shropshiremumParticipant]

Hello all.

I have to say, I’m finding these recent posts to be quite reassuring. I was diagnosed last November at the age of 48. It was a huge shock. I had six months of VTD, a stem cell transplant in July and have just had my first month on lenalidamide. As mum to a three and a half year old (who I’d waited a long time for), I hope to be around for as long as possible. 🙂

Here’s to as many years as possible for us all!

Susan

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