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Hello everyone
I have just registered with the site. I thought I would share what happened to me in my Myeloma journey. It started in October 2021 when I was admitted to hospital with pneumonia, i was only in hospital 3 days but it took a while to recover. In February 2022 I fell I’ll again with Epiglottitus and was taken to A&E and admitted into ICU for observation, I was discharged after 2 nights. I recovered at home slowly with à course of antibiotics for two weeks. I did feel that something might be wrong with my immune system so I took multi-vitamins and vitamin c tablets, I also focused on exercise and after recuperating I got back to my local leisure centre and back to all my usual exercise classes.
At the end of June 2022, I took my daughter swimming and it was the start of last year’s heat wave and I ordered a cold iced drink (made with whey powder): an hour later while cooking diner I started to shake uncontrollably. I went upstairs and while trying to get into my PJs, I started to shake again, my teeth were banging together so hard I thought they would break! At this time I felt my back go, it was extremely painful. I managed to get into bed but I could not get out of bed unaided. I rang the doctors the next day and he agreed with me that it was food poisoning and he prescribed strong painkillers for my back. It was very difficult getting out of bed, the pain made me cry out. I just kept saying to my husband that I just needed to rest as I had pulled a muscle in my back a long time ago and this was in the same place and it was the same feeling. I remember doing my online grocery shop in bed and that’s it! My husband told me that I became unresponsive and incoherent and that after calling an ambulance it arrived 8 hours later. I don’t remember any of this. I was taken to hospital and admitted to a ward where my husband saw me in a deteriorated state. My husband described later that my eyes were rolled back into their sockets, my tongue was clicking in my mouth, my limbs were rotating in the air and I was totally unresponsive. I was intubated and then diagnosed with Sepsis and Myeloma was suspected. I responded to the treatment given to me in ICU and I was transferred to the Haematology ward. Myeloma was confirmed but I was totally unaware of what was going on at this stage. After contracting COVID, I was taken to another ward. I don’t really remember much of this, I was very poorly. I only have memories mixed with fantasy and reality until my 60th birthday when I saw my husband. My main goal was to leave the hospital and I wasn’t really asking questions about what had happened. I was discharged 18 days later. As my husband couldn’t visit, he didn’t want to tell me I had Myeloma until I got home. It was a massive shock. I was in a very weak state, all my muscle tone had gone and I lost a dramatic amount of weight. I was so weak I couldn’t even push the button on the deodorant and had to use roll on for a while!
Five days later, I saw my consultant with my very long list of questions. Four cycles of chemotherapy started in August 2022. My regime was DVd-T which is Bortezomib-Daratumumab-Dexamethasone-Thalidomide along with all the other supporting drugs. To be followed by an autologous stem transplant and two more cycles of chemotherapy and then maintenance.
Well, it is now March! I finished my four cycles of chemotherapy in December and I have a very good partial response. I had severe constipation caused by taking Thalidomide and a few issues with sleeping because of the Dexamethasone. I have got stronger everyday and I am walking regularly for an hour at least three times a week. I went to physio in the first three months after leaving hospital which really helped. I am also practicing yoga once a week. I plan my meals for me and my family and cook everything from fresh.
I had my stem cells harvested in January. Yesterday my dates for hospital have been confirmed for the end of this month. My consultation has pre_warned me that they expect me to get Sepsis and gut rot! I am very nervous and feel so stressed. Reading other peoples experiences has helped me. One thing I was wondering about is how the stem cells are processed? I know that the had three bags of stem cells taken from me but the nurse said to me on the phone that they had 12 bags to give me?
Quite a long post! Sorry! I hope it also helps other newcomers and newly diagnosed people.
Welcome Lollipops, and thank you for sharing your truly horrific diagnosis experience. Fortunately most of us don’t find out we have myeloma in such a dramatic, life-in-the-balance way.
In terms of stem cell transplant, bear in mind that our doctors are obliged to tell patients of all common and less common side effects, as they do with all procedures. Although most of us have some reactions, few of us have really serious ones, and none of us have ALL of them. It isn’t nice going into hospital feeling well, as many of us do, knowing that we’ll feel rubbish for a time, but bear in mind many people agree to having a second transplant- because relatively normal life the other side is so worth it, and we can go on for many years before relapse and starting treatment again. Incidentally my friend who was diagnosed with myeloma 18 years ago also almost died in hospital at diagnosis, but she’s still here, leading an active life 18 years on. (I saw her yesterday)
As I understand it, the stem cells go through a centrifugal process, myeloma cells tend to be heavier and ‘drop out’ (I’m sure that’s not the ppptechnical term). The golden cells are then put into small packs in a solution that smells of sweetcorn and deep frozen in liquid nitrogen, which are stored until needed. They will be thawed in front of you, then reinfused through a port, a painless, relatively quick process, a day or two (depending on your kidney function) after you have the melphalan. Everyone other than you will be very aware of the smell of sweetcorn.
Thank you Mulberry for your reply. It is reassuring to hear about your friend who was diagnosed 18 years ago. I was supposed to have my stem cell transplant done on Wednesday. The consultant has told me that my paraprotein level has gone from 4.9 to 9 in 3 weeks. I have not had any chemotherapy since 8th December and there has been some delay in-between finishing chemotherapy and having my stem cell transplant. I am transitioning from one hospital to another as the stem cell transplant is not available in my hospital. I am feeling quite apprehensive now especially as the paraprotein level is rising. My PET-CT scan is booked in this Friday and MRI on Monday. As I understand it, if I have any bone lesions then I might have to go on chemotherapy before I have a stem cell transplant. Or I may be back in next week for the stem cell transplant.
I’m sorry to hear that Lillipops. It’s worrying enough heading into stem cell transplant, without then finding it is potentially delayed. One of my other myeloma group friends had exactly this experience, a sudden and unwelcome rise in paraproteins, last year (higher than yours!). In his case he returned to treatment for a few cycles before finally having the SCT (with a much shorter period between ending treatment and having the SCT that time).
He’s now happily over the transplant hurdle, and has started maintenance. (& planning holidays)
SCTs are done routinely at the regional centres and your transplant hospital will know what to do to get you back on track. I hope your scans next week will be reassuring & you’ll be admitted next week.
You’ve had far more than your share of twists and turns in your myeloma “journey” already, I hope things are easier from now on.
Hi Mulberry,
Thank you so much for your reply. I was worried about not having any more chemotherapy. Or indeed, why there was not chemotherapy before if they know of a delay. But I think in the main it is because I am on the standard treatment of therapy for someone like me. Anyway I am actually in hospital now, I had my high standard of chemotherapy now Melphalan on Tuesday and my stem cell transplant over 2 days, Wednesday and Thursday. So far so good. They are keeping at bay the nausea and sickness with medication but I am worried what next week will bring as this is when the more severe effects can kick in…
Hi Lillipops
Congratulations on getting over the first hurdles and having the melphalan.
Try not to worry about next week. A few of us sail through without ‘side effects’or with minimal ones.
I had convinced myself that I would be very nauseous, but managed to continue to eat throughout the process with little nausea. I felt very tired, and slept alot days 7-9 and it is the fatigue (& sciatica) that really stick in my mind, rather than all the side effects that I feared.
Day 12 felt quite magical, I woke up vaguely aware that I felt better, and increasingly felt better hour by hour. By lunchtime I was aware that I was over the worst, even though I had picked up a virus.
Roll on day 12 for you, and hoping that the days in between are easier than you fear.
Jane
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