Hi Sarah
Two thoughts ,he may need a longer course of antibiotics? the lungs have so many pockets that if some infected muck is left it will just regrow in a week or so.
Do his lungs feel tight at all or does he find it easy to cough up? I woud suggest askin about an atrovent inhaler as this would open his lung tubes and help him keep lungs clear and also steamy baths with a dash of eucolyptus oil may help.
Also drink lots to help thin the secretions.
I had to have an inhaler once to prevent chest infection and was told by immunologist we myelomics often need a full fortnight + of antibiotics and the full dose ie if the unmyelonics need 250mg for minor chest infections we need 500mg.
best wishes
Sue
David.
I would guess your ? enlarged prostate isnt helping with the frequent UTIS
I think /hope you will get less after your prostate is improved.
I understood that we were high risk for non encapsulated bacteria ie the ones that love the lungs ,my immunologist told me this many years ago when i was just a MGUSER .
I had an ungrowable infection in my bladder ? bladder wall straight after hysterectomy (catheterised),and the pain and frequency is "only" from my very sore bladder ,i had finally……. got this sorted after many rotations on antibiotics it had "gone" then 2 1/2 months ago bam its back and the antibiotics not helping much,had hoped asct would sort things like this as its immune related nvm
Glad youre feeling a bit better 🙂
best wishes Sue( not on dex but having the dex chatty,can't sleep feeel hmm)
Hi Vicki
I'm so happy,cells stored and now sct.
I hope it goes as smoothly as it can 🙂
I think i was good until? 6 days after melph then felt crap ,but was monitored extremely well with my bumpy times.
I too sucked ice 2 hrs pre melph and 2 hrs after ,ice was fine but my mainly soggy lemon ones tasted awful but i just munched on ,i had grade 1 mucositis,1 tiny sore that went fast.
I had morning sickness feelings yuck but hopefully he can't get those. 🙂
My sence of smell suddenly was amplified just as i started the downwood climb ,i could smell strong perfume as soon as a nurse came in my door ,i didnt know this could happen it was horrible strong smell = vomit
I found i could take grapefruit segments and squash and also sips of strawberry nesquik but banana flavour just sat in tum… then…
I couldnt drink much at all so unusual for me ,so just had fluid drip at all times 3 weeks i think !
I had my asct in may this year and if i can support,advise on anything please contact me
Onwards Tom 🙂 posted a cream for sore bots ,name escapes me but i requested that and used it and seemed to do its stuff(tubes upstairs) so forgot name for now
wishing it to go smoothly,safely and as comfortable as it can be for you both
will be thinking of you both and sending good vibes
best wishes
SueM
Suzywong@tesco.net
Hi Peggy,
I think the "standard" is to give cyclphosphomide then gcsf injs but I know Dr Cooke at QE Birmingham didnt give these when i last saw him .
I looked up to see how likly i was to predict ease of harvest and decided against the cyclo from my consultant.I didnt want chemo affecting my stem cells pre harvest,some say it does an extra cleanbut Mark cooke disagrees
I harvested 5.2 mill cells over 2 long days. with no chemo pre
I also wanted to delay my asct as appeared to be in remission from he velcade.I managed to get nearly a year of ok ness 🙂 then back on treatment for nearly a year as single wekly velcade this time and had asct may this year.
I didnt want to lose my hair earlier than when i actaly had asct partly as my daughters was only 9 and didnt want her gettin the whys ur mum wearing a wig ,I'm now in that wig and its messy like my normal hair and no one notices 🙂
The tests to check ur fit for transplant come after,ie lungfunction tests ,ecg etc
good luck for a wonderful harvest (ps the harvesting machine scoops from the blood and sifts out the stem cells into a bag but in another bag go ur red cells etc that got scooped up too so you can feel bit wiped out for a week after and the emotion of it
best wishes#
SueM
hugsssss Dai,why did it take them so long to diagnose? didnt they send stool samples???!!
Im running on 50% 4 months post sct !wish i was as strong as the men seem to be post sct?? lol so im only reading bits of our forum past months
I hope you will soon be feeling your better self 🙂 Drink lots and rest and smile ur made of strong stuff 😀
Sue
Dear Eve
Thats awful,times like this i feel so helpless.. sending you strength and my thoughts i can understand he feels need to delay asct.
I go in tomorrow for my first ,melp on weds i delayed till first relapse
sending a mega tight cyber hold
love Suexxxxxx
Hi Terry
Well it depends how they do it ,my hospital gave a cannula in each arm one takes blood out then it passes through a machine scoops out the cells then back in to body in the other arm so i had 0 movement had to keep both arms straight for hours !! others have a hickman line or similar and would be able to move i think.
Just take them in and a walkman i suggest
I had 2 days on the machine about 7 hours on each session and managed 5.2 mill and didnt have the chemo pre it.
For me i felt a bit wiped out but how much was down to the harvest and how much was down to end of treatment and bit worn out anyway im unsure ,think i felt more myself after a couple of days?
Good luck and wishing you a plentiful harvest
best wishes
Sue
Hi Kay,
Sorry SCT hasnt been as successful as hoped and you have the bone pain.
After trying numerous analgesic I started matrifen patches 12.5mcg/hour(fentanyl)
I had tried to get a longer lasting analgisia to maintain the level in blood and be more consistant.
I also managed to have a tooth absess the same day I started it ! so have had lots of oromorph in between which numbed me not the absess pain but…. the bone pain has been much improved finally ,my pain is ribs,femurs upper arms,I also have rheumatoid arthritis so please pm me if you want to discuss that not all people have a positive rheumatid factor or esr but still have an inflammatory type arthritis
I am due to have SCT sometime after finishing cybor d it will be ? march april and would love to know if any sct drug protocol is adding to the early failures?
Would you mind saying the drugs you had for sct including day given and dosage of any chemo therapy ones,also did you have any placemytomas or myeloma bone lesions still when you under went SCT?
If any other SCTERS want to start a topic and give their input i would be most greatful 🙂
I'm on my first relapse and delayed SCT till this time and like all of us want the best results i can manage from my sct even if it means trying to have further treatment at end of cybord which will be hard for me to persuade with my new consultant i think 🙁 my lovely old one retired
pp level pre asct would be handy and length of time from end of induction till actual sct and anything else that my tired brain has missed .
Good luck kay ,you may find your pp remains at 23 ish and stabilises I so hope so and wishing you comfort 🙂
best wishes
Sue (yes its a dex day can u tell 🙂 )
Hi John
I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses cycle 8 if that will be my last cycle.
This is my second course of Velcade,cyclophos and dex as I'm in my first relapse
best wishes
Sue
Hi John
I would love to know too how you managed to obtain a year please
Im in cycle7 of what i thought maximum allowed care of NICE was 8 cycles only ,my paraprotein plateaued and has since regained a few 20% drops but is still 10 g/l
I can't tolerate the full 1/3mg dose for each week but need to decide if worth trying for all 1.3 doses cycle 8 if that will be my last cycle.
This is my second course of Velcade,cyclophos and dex as I'm in my first relapse
best wishes
Sue
Dear Eve
Thanks for your response that is appauling .
When I had my first treatment ,lasted 12 days on cdt..then had 7 cycles of Velcade , cyclophosphamide,dex ,I chose this i was offered VAD and pushed for VCD/CYBOR-D as it had shown to be more effective than VAD and i was in a mess from CDT and VCD and more tolerable than VAD ,my old consultant did listen and discuss,knew what he could offer etc.
I had big delays waiting for bloods and treatment but nothing in comparison to yours,Im amazed ,I just want the departments communicating which shouldnt be too difficult to achieve and would help all patients on chemo not just us myelomics.
I was a ward sister so I understand hospitals in a way from both sides if you know what I mean. So I contacted the chemo part of our pharmacy and asked why the delays for my Velcade ,he explained if he knew my regular time slot he would now make my Velcade at 9am half hour after machine turned on and primed they can see on computer our slots in the unit from there computer,he also said it was random when the box was collected and would call the unit when my VELCADE is ready each time this improved that part a lot but sadly now procedures changed so they won't make it up till blood results 🙁
I am going to contact the IT dept to see if its possible to flag when results are ready?
My lovely old consultant is now coming in doing IT work so I asked if his lovely secretary can ask him to look into this too.
I think we need to gently enquire what is causing the delays ,sometimes its no seats,nurses at lunch 50 % go together which means only 3 left which slows treatments down in my unit.
I always ask the receptionist to look see if my bloods are ready or think i would wait many more hours it definatly needs improvement and wouldnt be too difficult or costly to improve and would reduce our fatigue and quality of life while on treatment.
my dose of Velcade was 1.omg/m2 thats based on 1mg per patient wait and =2.0mg with my 2 stone weight gain since myeloma ,on the 1.3mg/m2 i get 2.6 mg vel
There used to be 3 dose options availiable the normal 1.3 mg/m2,the middle 1.0mg/m2 ( found in studies to cause less neuropathy and be pretty effective ) and the 0.75mg/m2 that didnt help much these were the twice weekly doses
Now lots are doing 5 week cycles of weekly and they studied 1.3mg/m2 but are now using 1.5mg/m2 and 1.8 mg m2 on weekly.
My consultant was just playing lets wait and see and change no dose and refused i go back to twice weekly which i tolerated fine and did ok in 2010,I had been seeing the pp not drop much and knew it was unlikely i would even get to the 15 paraprotein pre transplant,he finally agreed last cycle to up the dose ,and i hoped i could tolerate it but i didnt having it 2 consecutive weeks but it appeared to have done the job , my consultant did change this next cycle to 1.3,1.0,1.0,1.3 then week off which is what i asked to try as felt it was best chance i managed to function ,(I have a 10 year old daughter and am single mum)
What concerned me was his attitude maybe hes not used to patients taking part and may have had a bad day? ………. but i felt like a naughty child that made life difficult changing the dose 2 cycles on trot to enable a treatment that stopped the plateau and that i could tolerate.
i even apologised for being so drug sensitive… and when he said i had to accept treatment had side affects I sais I was accping and coping whith breathlessness,fatigue +++ pain requiring MST,unable to go out much at all on the 1.0mg but couldnt manage the unable to function at all after 2 consecutive weeks of 1.3 so was just trying to make it work and wouldnt ask to change it every cycle … and that my father had seen the state i was in unable to make a cup of tea even as my cognition went appauling and my daughter spent weekend at my parents I think my consultant understood I just hated the presumption.
wow ive waffled on sorry ,think i just needed to share it sorry and that it wasnt a case he could change it or was a drug change
it was the drug sheet had so much red writing from the change last month I think…. but this is my life I think getting a few years life is more important than red writing..
thanks again eve
best wishes
Sue
Hi Dai
Thanks for doing this for us 🙂
I don't know if these are relevant but these are a few of my questions
1/ when and how can we get fish genetic testing from bmb more universally done ,rather than if you are at a forward thinking hospital ie the marsden?
(we are so far behind america who are already making treatment plans more individual and hopefully better ie remissions by using this data)
2/and others may be able to answer this here 🙂
Do all of you have to have the unit receptionists see if your blood results are ready and ok for that days treatment? its now taking on average 2 hours to get these back at my hospital and the pharmacy will not make up velcade till they get them
apparently the haemo lab puts the results on a different system to the one pharmacy and unit can see then it has to be transferred to other and doesnt falg up anywhere that its ready?
(ps can't go day before for them due to distance)
3/ Why do we not perform more mris ? i know cost of course but I think we need to look at the whole picture ,see if placmacytomas etc have improved gone after radiotherapy or tratment and also review the whole picture pre transplant I'm not totally pro america but this is also done often then.Each of the drugs has a different avtion and whilst bmb may look great at 5% and under after treatment I believe consolidation may be need pre transplant and therefore we get improved remission length post transplant possibly?
4/ why are all patients almost rushed to early transplant when studies are now showing that delayed is likely as effective? I value my near year of remission pre transplant the near normality was heaven and i believe it would have ben longer if the granulocyte for harvesting didnt appear to stir up what velcade had made dormant?
5/ re teams i would value someone at the hospital to help support me with consultant decisions ,sadly my lovely consultant retired in June ,just before my restarting treatment and my new consultant chosen by me is lovely but uniformed about me and seems a one size fits all haematologist and review at end of treatment,I had had same pp lvl since end of august and requested tryiong higher velcade as im on mid dose ,had 2 weeks of 1.3 and became unfunctioning but pp dropped finlly by 4 🙂 so requested trying again spreading dose and he was unimpressed said he wouldnt change dose again hmm ……
Can you tell its dex day haha
hugs all
Sue
sending you big hugs
keep taking the thinners and takecare shaving 🙂
Sue
Hiiiiiii Dai,
Sorry youre back on treatment 🙁 how long was your remission post sct?
I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2 weeks on CDT,I then went to twice weekly for @ 8 cycles
I hag a good responce to that cycle,and achieved at end a very good partial response with the treatment,bmb neg for plasma cells,pp1.2 and normal freelights
I just started treatment 2 and i'm doing single weekly velcade with 500mg cyclophos weekly and 40m ex per week,i asked for 3 on 1 off that was shown successful in research but consultant wanted 4 on 1 off(propylactics daily acycloveir,penicillenv,fluconazole,lanseprezole)
I started earlier this time pp was only 33 but rising by 30 % each month then i fractured a rib brushing my teeth !!
Next cycle will be "nontherapeutic2 dose of 2 weeks on 1 off to allow me to get away to Wales for 10 days 🙂 then will review what for cycle 3
My first months results are better than i expected ,i realise next month may mot be as thats what this disease is like but i worry a lot about the huge doese given like 1 size fits all and it doesnt.
We have the benefit of the free light test which shows the myeloma activity occuring at the time unlike the pp test that shows what was happening 2-3 weeks ago.
i sent off my blood early because i can and after 6 days in i could see my fre lights had reduced by 50% ,gave me so much peace of mind
Lower doses have proven to be affective i don't know why so many are not offered them??
I'm 20mg 2 days a wek and now will be 10mg dex twice a week as my dex myopathy reoccured last week.
Has this leg had a venogram to see exactly whats causing it?
hugsss Dai
Sleepy Sue 🙂
So the change in dose should make u feel so much more human and also kick the myeloma s but 🙂
Hiiiiiii Dai,
Sorry youre back on treatment 🙁 how long was your remission post sct?
I took Velcade last year as my first treatment and had the full dose the first treatment but got lighting sensations in my fingers so we straight away moved to the middle does 1mg/
I had cycle 1 as single weekly does as i was in a poor condition after 2 weeks on CDT,I then went to twice weekly for @ 8 cycles
I hag a good responce to that cycle,and achieved at end a very good partial response with the treatment,bmb neg for plasma cells,pp1.2 and normal freelights
I just started treatment 2 and i'm doing single weekly velcade with 500mg cyclophos weekly and 40m ex per week,i asked for 3 on 1 off that was shown successful in research but consultant wanted 4 on 1 off(propylactics daily acycloveir,penicillenv,fluconazole,lanseprezole)
I started earlier this time pp was only 33 but rising by 30 % each month then i fractured a rib brushing my teeth !!
Next cycle will be "nontherapeutic2 dose of 2 weeks on 1 off to allow me to get away to Wales for 10 days 🙂 then will review what for cycle 3
My first months results are better than i expected ,i realise next month may mot be as thats what this disease is like but i worry a lot about the huge doese given like 1 size fits all and it doesnt.
We have the benefit of the free light test which shows the myeloma activity occuring at the time unlike the pp test that shows what was happening 2-3 weeks ago.
i sent off my blood early because i can and after 6 days in i could see my fre lights had reduced by 50% ,gave me so much peace of mind
Lower doses have proven to be affective i don't know why so many are not offered them??
I'm 20mg 2 days a wek and now will be 10mg dex twice a week as my dex myopathy reoccured last week.
Has this leg had a venogram to see exactly whats causing it?
hugsss Dai
Sleepy Sue 🙂
So the change in dose should make u feel so much more human and also kick the myeloma s but 🙂
