[shropshiremumParticipant]

Hi all

I’m looking for a little reassurance, as my little boy finally returned to nursery three weeks ago, having been away all last year whilst I was having treatment. Lo and behold, as predicted, he has brought home a cold, and whilst he is now on the road to recovery, I am really struggling to shake it off, and have also got a dodgy leaky ear that’s been muffled and crackly since Friday.
I’m phoning my GP tomorrow morning (Monday) to seek some advice (I tried Friday morning, but gave up trying to get through), but I guess what I’m asking is has anyone else had something similar following chemo and the stem cell transplant? How long did it take to fight it off and recover? I’m on maintenance lenalidamide, so know I’m more susceptible to infections, etc. I just need to know that there is light at the end of the tunnel!!

Thanks

Susan

[justmeParticipant]

Hi Susan,

I hope you’re holding up ok. I don’t necessarily have any experience of a cold post SCT but a couple of months ago I’d picked up a nasty stomach infection (which doctors assumed I’d picked up post transplant as it was a common hospital acquired infection) and it took me at least two month to recover from it and begin to feel slightly better but I did get there in the end. I hope that’s of some reassurance to you. Keep doing what you’re doing and hopefully it starts to clear up for you soon.

Best Wishes

X

[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

[justmeParticipant]

Hi,

Glad to hear you’re otherwise ok. Apologies for not getting in touch sooner, only just starting to feel human following the infection. Maintenance has been up and down for me too as it really affected my bloods counts at all levels. So the consultant has decided to give me a break for a month to recover and get back to some normality after this infection. It’s taken it’s toll on me, and I’ve struggled emotionally with it.

My kidneys has stabilised which is good news. So they are currently at about 28%.

Let’s hope it’s onwards and upwards for both of us.

Nice to hear from you.

Take Care

X

[norfolkrogParticipant]

Hi,
Just came across this post – had similar experience.
Treatment: VCD (Velcade Cyclophosphamide Cyclophosphamid)plus four 4 weekly Zoledronic Acid since initial diagnosis August 2021. At present in to cycle six of eight.

Both my partner and I contracted a really nasty infection (cold from my Grandaughter?).
My very first symptom on 1st Dec. Suffered the expected nasty coughing and normal congestion through until the beginning of Jan. I then had an ear infection, which left me with what feels like a block left ear, and seems to be fluid/congestion in within my ear/and cavities. Have been treated with Antibiotics which cleared the infection – but now have very similar symptoms as you.

Feels like blocked ear.
Seems to improve in the morning, but returns once standing again
Balance can be impaired
Crackling sound in the ear
Have been given Steroid Ear Spray – to no avail, and then Steroid nasal spray.

We know the infection was nasty since anecdotal evidence locally, and the fact that my Partner suffered worse than usual, and took longer to recover.

General opinion seems to be it can take 8 weeks or more to clear (if you’re unlucky?)
Mine has slowly improved, but has been with me now for 9 weeks, and off to discuss this with my GP in the next few days.

I hope your clears up much quicker.. but also that this might help allay any nagging worries.
Sensible advice time: do consult your Doctor if worried; mine is simply a layman’s view!

Roger

[richfsModerator]

Hi all,

Myeloma UK have just trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.

Just a very quick note to say that I (like all of us on chemotherapy or after a SCT) was very worried about infections. I’ve had a couple of colds which haven’t affected me any worse than other family members who have had them, so the immune system can recover and do its job. The old remedies of drinking plenty and having rest are good to remember. Do be aware of your white cell count as this can go up and down a lot following the SCT, and if low may indicate that you’re fighting an infection.

Keep in touch with your specialist nurse and the rest of your team, they’ll want to make sure that you get the best support.

Best wishes,
Rich 👍

[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?

[kh0305Moderator]

Hi shropshiremum,
I’m one of the discussion forum volunteers and saw your post. My dad was diagnosed with MM in 2013. Luckily he somehow avoided any kidney issues so I cant comment on how his kidneys were affected during illnesses. However, there were a few times though when he was down with particularly persistent bugs that his blood counts were definitely affected. I don’t remember the exact figures but the reason I remember is that his consultant took him off or tweaked his treatments during these periods to give his blood counts a chance to recover, so I would guess that because you have been unfortunate enough to have a bit of a run of bugs they’ll be having some impact based on dad’s experiences. Probably worth just mentioning the illnesses at your next consultation, if you haven’t already, and getting some feedback from your medical team as to best course of action to get you back on track. Hope you are feeling better soon bless you – you must have had your share by now! Take care of yourself x

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