Tagged: Peer
This topic contains 10 replies, has 4 voices, and was last updated by 
kh0305 2 years, 1 month ago.
Hi all.
I haven’t heard from my consultant since our last telephone appointment which was 28th October. She discussed my bloods test results but said she hadn’t requested the test to check my levels but as from the test before they were ok. Reassuring (haha). She put me on 5mg dose of Lenilidomide but it affected my kidney function quite bad, so she wanted to keep an eye on that.
I have my zometa infusion every 4 weeks and every time I ask the nurse what my kidney levels are like and oh boy they are really good but I haven’t heard a thing from anyone.
Mind you, I had my SCT postponed back in August due to the rise in Covid numbers. I haven’t heard from my consultant about that either, but he said I’m in a good remission. So no urgency there. If it wasn’t myeloma it would be a different story but as it’s not life threatening…
How often do you see or hear from your medical team? I feel like I’ve been put to one side like I don’t exist. I know I’m not her only patient but I really should’ve started on the tablets again although I’m not a big fan of the Leni in whatever dosage.
My Sheila gets a face to face every month with Dr. Jim at the Christie…this last round is the first with a two-month cycle. Wonderful bunch at MCH so we take them home baked cake every visit to make specialist nurses Emma and Decima laugh out loud.
I had a Complete Response to SCT (ie no paraproteins/m spike apparent) and have stayed like this since, almost 3 years, but I am still having complete sets of blood tests and telephone appointments every 2 months. I’m having lenalidomide maintenance which has caused my WBC & neutrophils to get low so my dosage was lowered 2 years ago & I presume I’m being kept an eye on for that reason.
I feel that I am getting much better care than you are, even though I’ve been through SCT already,and that was successful. I too would be worried if I was not having the full range of tests. Having said that, it’s very positive that you had a Complete Response without needing the SCT, and in USA some (perhaps many) MM patients in your situation don’t have SCT, leastways not for some time after finishing induction treatment. Your Dr should have a plan, and be communicating with you so that you can trust her implicitly and not need to worry about your myeloma.
As a first step I would write to her asking to have complete blood tests repeated, and for a follow up telephone appointment. I know it’s not nice making a fuss, but there are times when we have to.
Do update us on what happens next.
Hmmm…
Out of the blue, I’ve had a phone appointment come through with my consultant. It’s this Thursday, First 1 in 3 months. Had my bloods done yesterday so hopefully she asks for the complete set of results unlike in October.
In my original post, I put that my kidney function was good. Not this time. I was on the limit whether or not I got my Zometa as it was so poor. Worrying…
Oh well, fingers crossed everything goes well.
I hope your appointment was reassuring, and that you’ve been reassured that you will be having regular, predictable appointments from here in.
Hi
Yes it went ok thanks. I’ve had my next appointment through already! I wouldn’t say it was a positive consultation as she asked if I’d heard from transplant hospital. I said I had heard from anyone but wasn’t expecting to due to Covid (such a swear word 🙁 ) and they’ve got to be below 15,000 then I may get my SCT. She laughed telling me I’m going to be waiting a long time. She doesn’t fill me with the greatest confidence. Oh well.
Hi ree2112,
I’m a volunteer on the Myeloa UK forum and just saw your post. My dad was having his appointments once a month pre-covid which changed to once every two months via phone during covid. He then went into relapse in late 2020 and it seemed to take forever to get any action and no change in the frequency of appointments. He finally started treatment mid 2021 and then was put back on to consultant appointments every 4-5 weeks, though these were often over the phone and he seemed to speak to somebody different every time. It was about 3 months at one stage before we actually got to speak to dad’s consultant face to face. I appreciate with covid going on there was probably a staff shortage and they were under pressure, but it still felt very frustrating and a lot of waiting for results that weren’t forthcoming! I’ve found I have to ask for results more often than not and, since we’ve been doing this, we are getting figures given at each appointment and copies of MRI reports etc which we weren’t getting before. I hope this helps and your appointments are now more regular and treatments are all going well.
Hi kh0305
I hope your dad is getting on ok.
I feel like this journey is getting beyond a joke now. My last appointment was with a doctor from haematology not my consultant, that didn’t bother me as it’s expected but her attitude was very crap. I asked about my blood results and all I got was yeah they’re ok. I asked about my kidney results and I got a half-hearted answer saying that wasn’t good. No levels, no numbers, no nothing. At the time my legs were severely swollen and I told her. The response I got was that I’ve always had swollen legs. At this point I got a bit shirty… I informed her that I haven’t had any swelling since my chemo ended and that it was a side effect from said chemo. This I was told by my transplant consultant. Her response was that it could be heart trouble get in touch with your GP. I’m in terrible pain with my back and apparently was supposed to have a referral to see someone about pain management. When I asked all I got was it’s a different department, you’ll have to wait. Does anyone else feel like they’re a drain on medical resources? I do!
Oh well, I’ve got a face to face next month with my consultant. Still nothing about pain management though.
Hi ree2112,
Sorry to hear that you’re suffering with your back pain at the moment and still not having much joy in getting appointments in. We are in similar position where we feel like we are constantly asking about appointments. Dad’s ended up phoning to book in his own blood tests on a number of occasions as they seem to keep forgetting to organise this for him! He’s doing ok, thanks for asking. Since his treatment regimen change he is feeling much better. Still too early to know if the treatments are working as only just commenced cycle two, but just nice he can get back to bit more normality!
I am pleased to hear you have a face to face scheduled with your consultant next month. I hope that it comes to fruition as we have seen many different people over the past year when it should be with our consultant. Some have been good, others not so much! I’d definitely say to use the appointment to press home all of the issues you have. When we finally got to see dad’s consultant after the 3 month absence of any face to face contact, I went in with a list of everything and was like a dog with a bone and didn’t stop until we had come out with a referral for an MRI, colonoscopy and nutritional supplements and offer of dietitian referral (they didn’t seem too concerned that he had lost two stones so I made sure they knew it was an issue!!). I don’t know if you have anyone going along with you to the appointments, but we’ve found since we have been allowed back in with Dad, having a second person there to push points home and pick up on bits that dad has forgotten to mention (his treatment is making him quite slow mentally at the moment so within time confines he has difficulty getting to the point of things so has helped to have a [prompt/second voice).
I’d definitely keep pushing in your appointments for results/answers as you have been doing and follow up with the GP to get answers on heart trouble because even if it isn’t at least you can go back and say I’ve had that clearance so it is the treatment etc.
It is frustrating having to deal with the admin nightmare on top of the concerns of your health and treatments that take up so many of our thoughts at the moment, we could definitely do without it. Good luck with the consultant appointment and make sure you keep pushing for answers! xx
kh0305
How is your dad?
I’ve had a new consultant since I first wrote this and quite a lot has happened too.
My hubby got in touch with his sister’s palliative consultant as my old consultant was dragging her feet, who agreed to see me back in March. I now have a hospital bed as I couldn’t sleep with my back pain. I have got my pain under control too. I’m on morphine 3 times a day plus oromorph if needed, so pain is all good 🙂
My new consultant turned out to be the one on the phone and oh boy I was wrong about her. I went with my hubby as I was expecting a telling off for sorting my pain out but no, she wanted to know how we did it and John in his bluntness told her… I was asked how often I go to the CNS clinic, I didn’t know she had a clinic. She now phones me on a regular basis. She chased my Stem Cell Consultant and I got a call from him back in May. I’d been chasing information for months and nothing. But I’m still waiting for that!!! I even got an impromptu phone call from her the other week wanting to know why the transplant is still pending, asking if I still hear from my CNS and a general chit-chat. Although, she did tell me I must not have any more delays to the SCT as proteins are showing in my bloods again.
Oh and as I’ve never had my kidneys checked, she was going to get in touch with the medical physics dept. The next day I got a phone call with an appointment.
I feel for once, I’ve got someone in my corner.
Marie xx
Hi Marie,
Lovely to hear from you again and with such positive news. I’m really pleased the consultant has turned things around and that you are now seeing some progress and even better that you’re not having to suffer with the back pain so much. Lol good on John calling a spade a spade. Sometimes that is just what is needed and it definitely got you where you needed to be and long may it continue. Hope the kidney checks go ok. Let us know how you get on with everything now you have some forward momentum and hopefully it won’t be too long until they get the SCT sorted.
Dad’s doing ok thanks. He has an appointment next week with his consultant and still a couple more rounds of them to go but so far everything is looking on track which is a much better place than we were in this time last year! Long may it continue
Take care and keep us posted xx
You must be logged in to reply to this topic.
