Hello Olivia
So sorry your husband is having a hard time with the meds and side effects. Hope this improves for him.
The meds I’m on is
Aciclovir, omeprazole, fluconazole, apixaban,
Co-trimoxazole, ondansetron, Dexamethasone, cyclophosphamide
Is this the same as your husband?
Thank you
Paula xx
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Hi Paula,
Today he is feeling much better thanks and after two days, finally been to the toilet. The things we talk about!
- His CHEMO MEDS :
Lenolidemide, velcade , ( injected in tummy) cyclophosamide, dexamethasone and now isatuximab infusion once a week.
He also has zometa bone infusion every 4 weeks. - SUPPORT MEDS :
Aciclovir - anti viral, Apixaban- blood thinner adcal - calcium tablet,
Lansoprasol - acid reflux ( only same days as dex)
Doctor just stopped co- trimoxazol due to bad rash.
Metaclogramide- anti sickness. Not taken any yet, not really had nausea.
Glad you doing ok with them. Also good if you didn’t need the isatuximab, means you are responding well. So happy for you, I hope you celebrated!!
It’s so nice to compare and see how others are doing. Take care.xx
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Hi Paula, just checking in to see how you are doing. How’s the treatment going? I hope you are feeling ok.
Hubby is off his chemo for the second week as his liver makers were high when bloods last done. First they thought it was viral and now they say it may be one of the meds. He’s had a scan on his liver and thankfully it looks ok. The numbers are doing down which is a good sign but they want them a bit lower before he restarts his chemo meds. He is very frustrated as doesn’t want to delay things. The medical team and I have explained that there’s no point continuing if chance of damaging his liver. He is also not sleeping much and he struggles with fatigue. I have started encouraging him to get more fresh air and do small amounts of exercise. I’m trying to think of new hobbies or tasks we can do, to improve his mood a little bit. He has been semi shielding too as he wants to avoid too many germs, as lots of cold and Covid still around.
keep in touch and let us know how you are.xx😂
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Hi Olivia
Sorry to hear your husband is having a bit of a hard time, hope he gets back on track with his treatment pretty soon.
I seem to be coping well with the meds but haven’t been sleeping so good this week.
I see my consultant on wed, I have 6 weeks left of chemo. I have a medical on Feb 19th not sure as yet what the plan is after that for dates for Stem cell transplant.
Look after yourself
Paula xx
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Thanks Paula. So glad that you are doing well on your meds/ treatment. I think nearly all people on the chemo seem to have some issue with their sleep. I suppose it’s how we deal with it that counts. Hubby tends to get up have a drink, then he does puzzles or reads to occupy his busy brain/ mind. He says his races like mad sometimes. I don’t sleep well either mainly due to back pain, but even less now as I worry about him! I try to relax by doing breathing exercises or listen to calming music.Whatever works I guess. I want to try and get into yoga and mindfulness to see if the help.
We will be thinking of you when you see the consultant. Im sure 6 weeks will go very quickly too. I’m sure your transplant team will explain everything to you when you have had all the relevant tests to make sure you are ready. It will be here before you know it and I’m sure as you have done well on the treatment, and your age, you will fly through the transplant. Try not to think of it too much and just get through each day.
Sending you our best wishes… Thanks for staying in touch.xx
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Hi Paula, just checking in to see how things are going for you. I hope you are doing ok.Hubby back on treatment after 2 weeks off due to liver issues. Fingers crossed you both continue to progress as you should.x🙂
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Hi Olivia
Glad your hubby is back on treatment.
I have my last chemo injection on wed, the following wed I go to Christie’s to see what’s happening, then bone marrow biopsy on the 19th consultant on 21st hopefully find out what date I’m having my Stem cell transplant. My pp has come down to 4.5 so far so looking good.
Hope treatment continues well for your husband,
Please keep in touch xxx
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Wow @Paula1 you have a jam packed month and beyond coming up.
I find hospital appointments are so exhausting emotionally, physically, psychologically and practically.
Please try and really look after yourself as well and please do keep posting
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Hi @Olivia I am glad that your hubby is back on treatment.
Really look after yourselves both of you and let us know how you are both doing
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That’s good news Paula. So pleased for you. Everything is going in the right direction. I’m not sure what is a good range for paraproteins as we haven’t had any numbers for hubby yet. Do you know what the range is?
I’m sure you will soon be having your transplant. We will definitively stay in touch. We would love to be part of your whole journey, particularly your next stage - the transplant. We will be here all the way. Take care and keep us in the loop. I’m sure you will sail through, just like your previous treatment. Take care.
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Thankyou Erica. Will do. We hope you are keeping well too.xx
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Hi Paula,
How are you doing, hope things still moving forward. I think you were due to visit Christie’s last week . How did that go? Hopefully you are more aware on what will happen at your next stage. Hubby just started cycle 4, after his 2 week delay. Fingers crossed you all stay healthy as you progress onwards. Let us know how you are. Take care…x
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Hello Olivia
Yes I have been to Christie’s to see the consultant, it was all good,
I have had another bone marrow biopsy today for the trial. I have lots of appointments at Christie’s for blood tests through March before they take my cells out ready for transplant which will be around mid April.
Glad your husband is on the last cycle now is there any news for his transplant?
Take care
Paula xx
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@Paula1, so glad things are going well for you. You will be busy at Christie’s for a while then. Good luck with the tests and harvesting.
Hubby not had a meeting yet about his transplant, but we know it won’t be long now. Possibly April, if he follows your plan. Keep I touch, look after yourself.
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Hi Paula I too have just been diagnosed with asymptomatic myeloma, which I asked was this smouldering and was told no! But they are listed as the same so I’m also confused!
I had an IGG lambda paraprotein of 18.1, was sent for bone marrow biopsy and this showed 15% plasma cells in the trephine which they said tipped me into the myeloma category
Repeat bloods in December showed my IGG lambda down to 13
I’m on watch and wait with bloods on 1st May and I’m feeling confused about everything to be fair, the Consultant was nonchalant and not very empathetic
What was the change in your results that you had to start treatment?
Hope you don’t mind me posting on your thread and that you’re doing ok!
Best wishes Sharon
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Hi @Ellyrose I am so glad that you have posted on our form.
It is all so confusing isn’t it and often does not feel logical.
I found that ‘watch and wait’ or also called ‘active monitoring’ took quite a while to get my head round and I could not explain to work what I could not understand myself.
I also felt the only one in the world and in a bubble with the world going on normally around me.
We are all very unique people with our own medical histories and although I am definitely not a medical person, I have realised that a medical person takes far more things into account than just one blood test.
I have been a very lucky girl and I have been on watch and wait for 20 years, others start treatment ant time along the way.
My blood tests do fluctuate.
As for your consultant not feeling empathetic, personally I write down all my fears, questions and practicalities and be ‘pleasantly assertive’ and not end the consultation until I get answers I can understand. If you have a special nurse or GP you can always try them with any questions.
The main thing is that you really look after yourself and keep posting how it is for you.
The Blood Cancer UK support line is there for you on 0808 2080 888.
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Hello Ellyrose
Sorry you have been diagnosed with asymptomatic myeloma, such a shock at first.
Mine was caught really early and I was told I would be on watch & wait for a couple of years or until it progressed. My pp was 27.
I was asked if I would like to go on a RADAR trial which I accepted. Then I get a call to say they were starting my treatment the following week it was such a whirlwind. Anyway I have had 4 cycles of chemo plus plenty of tabs. To be fair the treatment was fine apart from feeling tired. I’m having a stem cell transplant at Christie’s in April which I’m dreading.
Have you had a bone biopsy & MRI scan?
My pp is now 4.5
You take care and please keep in touch
Paula x
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Hi Paula I had a bone marrow biopsy which showed 15% monoclonal plasma cells which they said tipped me into the myeloma diagnosis
My igg lambda pp is now 13, coming down from 18.1 - do you know what the normal range for this is as no matter how much I researched it, I can’t find a normal range!
I got a letter from the consultant this morning who wrote I am borderline for this diagnosis based on the above - but from what I’ve read it seems more than that? Hence I’m confused!!
Thanks so much for replying x
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Thank you Erica for your reply and support x
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Hi, I think the normal pp is under 10, but I could be wrong. You might be on watch & wait for many years and not need treatment. If you don’t mind me asking you what is your age?
Thank you xx
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