Hi - ive just finished my first week of treatment for myeloma. Daratumumab, bortezamib, thalidomide and dexamethasone. For the last 3 days ive felt a bit off with sore ear and throat on one side. Temperature 37.7,8 on one side. Hospital saying only come in if its 38. Im now freaking out in case it suddenly gets worse. Read some disturbing stories of infections in early months of treatment .
Hi @Ela789 I am so glad you have posted when you feel so rotten.
I am assuming by the hospital you mean your treatment specialists.
I think it is so scary when you are in unknown territory, medical people are used to working in medical situations.
The other thing is these things so often come on at the weekend.
Perhaps try and have an early night and really be very kind to yourself and try and get some sleep
Did the hospital give any advice of what you might take to ease your symptoms?
Perhaps keep drinking plenty of liquids and keep posting. Sending ou a supply of hugs xx
Thanks Erica . Its all a bit daunting and overwhelming and yeah weekends are worse. Specialist centre say come in if temperatures reach 38 or over but that if it’s a viral bug then im safer at home. Don’t fancy going to A&E on a Saturday night …. Especially bonfire night!! Infections kinda freak me out….
I had a hysterectomy @Ela789 between Christmas and new year one year and I got discharged on the evening of New Years Eve
I got home and clambered into bed and snuggled down under the covers and got off to sleep and then was rudely awakened by the fireworks at midnight!!!
Yep, infections always make me feel that I am out of control and A&E on a Saturday night is really not appealing xx
Do you have a helpline number that you can contact
Mine is direct to haematology ward in Worcester
The treatment you are on will start to lower your infection fighting part of your system so you will be open to infections and they can suddenly come on.
Do you have a chart that lists symptoms and temps
It’s very important to catch an infection before it gets worse so don’t be afraid to contact the number you have.
Thanks 2DB. I have the number of my haematologist department. They advised to stay at home and call if my temperature reached 38. Said I was safer at home with a low grade temperature. It very much raises the stress levels though, especially on weekend evenings when you see temperature tottering around the 37.8/.9 mark. I need to take a few questions in tomorrow.
Also, because this is only the first week, I dont know what symptoms are part of the medication regime and what are not. Temperature is lower today but feel really shaky - is this due to the medication or to infection. I guess it’s all a bit scary being new to the whole thing…
Thanks to you and Erica for your support - the temperature pic is helpful.
It’s all so new isn’t it and the helpline is invaluable there are no questions that they haven’t heard and they are really good at putting your mind at ease
I was a regular it felt like when I was calling
Back in 2017 it was Cheltenham I had to call and I spent many a time there that I had my own bay
Prevention is better than cure
If your not sure call
Keep a note of all symptoms your experiencing and let your team know they can reassure you
I’m on maintenance dara and Dex and I get the shakes after I finish Dex days
Went to the hospital for my second week’s treatment today. Was checked by doctor, and spoke to nurse specialist. All was ok - probably a little viral infection going on but temperature is down again towards normal. Nurse specialist reassured me somewhat. This weekend was a bad one - but I guess that’s normal too when you start off on treatment. Could have used not having the viral stuff to add to the concerns!!! Anyway, guys, thanks for your support. The weekends can feel pretty lonely when you’re not feeling well and frightened so appreciate you taking the time to get back to me. Thank you. xxx
Oh @Ela789 sorry to hear that you had a bad weekend.
Your forum family are always around supporting you virtually, like a snuggly comfort blanket.
Treatment can be very scary, please do use your heamatology team and the Blood Cancer UK support line on 0808 2080 888 and keep posting xxx
Feeling more relaxed - treatment went ahead as planned on Monday. Got slight throat infection and glands up but not needing antibiotics. Soecialist nurse also reassured me somewhat that any infection would be swiftly dealt with… and not to be reading research papers that freak me out !!! Im hoping that my anxiety settles down once im a few weeks in xxx
Yep, please do not read anything that freaks you out @Ela789
Please do use your specialist nurse I have found them to be wonderful and yours is obviously very wise!!!
Please do keep posting, we are here for you.