It’s helpful to find this thread. I’m on low-dose Lenalidomide since SCT last September, and had my first Zometa infusion 3 weeks ago. No apparent side-effects, but about 17 days after the Zometa my sternum area felt a bit bruised; the discomfort has slowly increased over about 5 days, and has spread a bit to other areas – left hand, lower spine – so that movement is a little more limited. I thought that I might have lifted and swung my 2.5 yr old granddaughter a bit too much! I’ve paused my daily physio routine because I feel too uncomfortable (how beneficial was that, btw! – fantastic PRiSM department at UCLH).
I’m about to contact my nurse about it, but am somwehat reassured meanwhile that this can be a side-effect, and might ease. So, thanks for the posts, folks. (Got my eye on the unused morphine that had helped me through the first agonising month or so back in Nov 2019, but hope that I don’t have to resort to that.)
I noticed another post (#118839) from John “Side effects include flu like symptoms and bones aching to begin with but in the end get better.”
Miles
Thank you, Rachel. That’s very helpful, especially the 6 months advice, and “…. even with a normal neutrophil count, it’s like having the immune system of three-month-old baby because the acquired immune system has to start maturing all over again.”
We have acquired a shelter in the garden too – looking for an appropriate, safe, heater for it … can you please let me know what sort you have? We don’t wish to set fire to the “events shelter” that isn’t all that high!
M
Thanks, Jane. They say 3 months at least. They must play safe, of course. It’s a matter of weighing the risks; it was hard enough without CV, but that now adds a significant extra dimension, as you say.
We are in uncharted waters for statisticians in the fields of Myeloma and other chemo-related illnesses: prospects of recovery from CV contracted n months after a course of treatment has finished. I don’t wish to be a statistic, so must be very careful. But it’s very frustrating, and very tough on the family having to take such stringent precautions.
I’m 69. Diagnosed mid-Oct 2019. Doc was satisfied with my fitness (average physically active, certainly not a fitness freak) and assigned me to the heavy chemo regime – Dex Velcade Thalidomode. 5 months. Then washout month. SCT due to start mid-April was delayed 3 months by Covid-19. so I went back on 2 months “holding” (Lenalidomide and Dex). At last came harvesting (July 20) and SCT (Sep 2).
Not much mucositis (many Calippos during the Melphalan drip), diarrhoea, brief loss of appetite Days 2/3, felt good enough during the 1st week to use the exercise bike in UCLH Ambicare; PICC line infection Day 8 put me in hospital where I had antibiotics, saline drip, platelets; discharged Sep 18.
I didn’t feel all that unwell during the whole SCT fortnight. Despite BP of 68/50 and temp peaking at 40° at the start of the infection the docs thought I looked pretty good. Never felt sick or needed anti-sickness meds, although I took them for a few days from Day 0 on their recommendation but soon stopped. Tiredness/sleep was random, sometimes I just dozed off a bit during the day, sometimes pretty wakeful at night, or fast asleep for short bursts.
Now 5 weeks into recovery at home. Some days early on I had to sleep mid-afternoon for 30 – 90 mins, but that need soon left. Appetite has been good throughout except for that brief spell Days 2/3. The worst thing is being limited physically: I was used to doing DIY, sometimes quite physically demanding, and now I push myself somewhat at certain tasks and activities (carpentry, bike-riding) and must pause mid-task to rest – sitting back for 5/10 mins, or just to catch my breath. Cycling is great – it is perfect exercise, because my back (compression fractures) is well-supported by the arms. I don’t know if the physical tiredeness/stamina limitation is because of the SCT recovery or muscles doing overtime when I am more physically active and not supporting my back – even things like cooking, washing-up (unsupported) are taxing after a while – or both. PRISM (a tailored physio regime) is imminent, I understand.
It’s interesting how the side-effects vary. I’ve just arrived home (discharged, officially “engrafted” on Day 15). The fatigue is pretty intense. I’m assuming that this is related to low haemoglobin levels (neutrophils and white cells are doing great – way back to normal) so oxygen supply is limited – the slightest effort – getting up and walking to the loo and back makes me breathless. Need to wee frequently, so nights are a right pita because I can’t get a good solid sleep. I need to take the odd nap during the day. very lucky to have wife and a son fetching and carrying, and feeding me. Mucositis is/was not too much of an issue – 6 orange Calippos during the Melphalan infusion … don’t want another one! .. I recommend bringing your own plain ice in an insulated bag… one ulcer inside cheek was a nuisance for a while, and now my throat is a but tight and slightly uncomfortable still when swallowing.
As for the SCT itself, UCLH Ambi Care and then the hospital itself were phenomenal. Mind-blowingly world-class. They warned that I would feel “rough” from about Day 5. That started almost immediately – little appetite, just listlessness but not too intense. I availed myself of the exercise bike in Ambi Care to help keep mind and body fit. What an asset. And the big red chairs with footstools at that far end are v comfortable to while away the time reading; more comfortable than the Cotton Rooms leisure furniture – although I don’t wish to sound churlish … they are fantastic, great breakfasts, and a nice quiet lounge with different design of chairs and sofas – they just don’t wish you to put feet up on sofas, even w just socks on – I really needed to do that.
All was going pretty well. Appetite soon returned. But on Day 9 I awoke with a temp of 34.8 feeling a bit shaky, managed to eat fruit and yoghurt, got back to my room and was shaking all over. had a hot choc, and immediately threw everything up. Temp of 38.4. Phoned the hotline … come in immediately … packed my things and walked the few minutes to AmbiCare, who swung into action. By 1400 I was in a room in the hospital… IV antibiotics etc.. BP down to 68/50 temp hit 40 degrees … and the next day had the diagnosis – PICC line infection by Pseudomonas, that lives in the gut normally but escapes through the weakened gut wall and breeds in the nice slightly sticky surface of the plastic tube. They whipped it out, and continued the treatment… platelets infusions, oxygen, obs every hour 24 hrs for a day or so, and slowly the BP rose, hovering round 70/80 for some time, and temp fell back to the 36 low 37s. At one time I had the haematology doc, another doc, and two heavies, one from PERRT the other from ICU at the door of the bed – they just are a few steps ahead so that they are as prepared as much as possible should one need to admitted to ICU, such is the high level of care.
Hope that helps.
Thank you all for the tips and experiences. My cells were collected by the wonderful team at UCLH on July 20, three months delayed due to CV, and I’m going in to UCLH tomorrow Sep 2 for the Melphalan, and cell transfusion on Thursday. It’s been very helpful to read all the posts here. Nobody has revealed their age, and it would have been interesting to read a report from someone of a similar age to me; I’m a pretty fit 69, heart and kidney tests passed ok, and my doc is very pleased with how I have responded to treatment so far (started VDT late October 2019, then 2 months “holding” Lenalidomide and Dexamethasone because of CV delaying the SCT) – the recent bone marrow result (Aug 18) was clear; I’m pretty confident, although it’s by far the most serious procedure I’ve ever had, so I’m slightly apprehensive. The team at UCLH are world-beating (if that phrase still holds credibility). Anyway, I’m determined to get through it because I’m dead keen to sail my dinghy again next season. Now I’m off to source a soft toothbrush, or some of those spongey things and some absorbent pads for the diarrhoea! (Only the small matter of restorative spinal surgery when I’m through this stage.)
