Biffboff, you are very welcome.
Do ask any questions, we know how challenging it is when the possibility of blood cancer related conditions are raised.
I hope you got some answers when you saw the Dr today.
Most patients with myeloma have low levels of red blood cells and haemoglobin rather than high.
I had very high ALT at one time, but I think that was my liver not coping too well with a treatment rather than myeloma itself. ALT & AST test liver function.
Jane
Hello, welcome to this group, ya group I’m sure you would have preferred not to need.
I’m not sure what the last part of your test result means, perhaps some of the detail was missed off?
The results seem to be saying that your kappa light chains are within normal limits, but your lambda light chains are rather high which means that the ratio between them is also out of the normal range. 79 mg/l may feel very alarming, but actually that level is not particularly high. Many myeloma patients have levels over 1000 mg/l when they are diagnosed, & it is possible to be over 20,000 mg/l.
It’s very hard when you’ve got nothing to judge abnormal figures against. When I was diagnosed my lambda light chains were 250mg/l which I found totally alarming, but the haematologist wasn’t concerned about this at all, just in my paraprotein level.
I hope this helps (I’m not a Dr though!)
Hi Mariposa
If I remember correctly, you have a diagnosis of MGUS as well as being on the cusp of Parkinson’s?
The benefit of being diagnosed with MGUS is,or should be, being tested when suspicious pain occurs. If you are unlucky enough to progress to myeloma, it should be caught early before significant damage has occurred. I would ask your GP (or a Specialist Myeloma Nurse) for tests to be done.
That pain may reflect myeloma damage is always a worry, but fortunately sometimes it proves to be for more straightforward reasons.
As a myeloma patient I have asked for, and been given, several scans over the last few years- after suspicious pain. Fortunately in neither case was it caused by myeloma raising its head again, but by trapped nerves- much easier to treat! Myeloma doesn’t usually come on so suddenly, but can do so, and I wouldn’t have dared to get physio type treatment without ruling out myeloma as the cause.
Do inform your medical team of your hip pain, don’t wait, and if GP is unhelpful (some are more knowledgeable about myeloma than others) contact the Haematology team for advice.
Best wishes for the SCT gc, i hope you’ve been told about the benefits of sucking on ice/ice lollies before, during and after your melphalan infusion. If you go really over the top with this, cramming your mouth and continuing despite it being uncomfortable, you have a very good chance of totally avoiding muscostis, which must be one of the nastiest side effects, it completely worked for me.
In terms of exercise, talk to the nursing staff when you arrive. You may find that for the first 5 days after SCT that you are allowed off the ward so that you can walk around, or that an exercise bike will be provided. I was allowed onto a little used corridor just off the ward I was on for the first 5 days.
Until I was neutropenic (day 9) I was allowed out of my room to walk up and down the ward and tried to do this a few times a day. In hindsight I should perhaps have done it hourly as I did get sciatica from so much sitting.
It will help you to get up, showered and dressed each day,if you possibly can, even if it feels an effort.
Once you get home you are likely to find it easier to exercise and to pace yourself. If you are lucky you could be home in as little as a fortnight. I was in overall for 3 weeks, because I caught a virus, but I “knew” (felt increasingly better hour by hour) I was over the SCT itself on day 12. Once home fatigue was my only problem and that felt better by day 37, much better by day 60 and by day 80 I was champing at the bit to get on with normal life.
It’s an interesting rite of passage for us myeloma patients, but really can lead to better things. I’ve now been over 4 years with no myeloma related health issues. Well worth 3 weeks in hospital!
Wishing you all the best, and access to a good fan in this hot weather!
Welcome to the forum Hyde.
My understanding is that age 75 is on the cusp agewise of being considered suitable for stem cell transplant, so as Tony says, you need to check out with your drs whether it’s now or never for you to have the procedure.
Stem cell transplantation is a daunting process to enter, you go into hospital or clinic feeling pretty well, knowing that you will feel worse. However most of us end up agreeing to do a second transplant, fully knowing what it entails, if we are offered it. For the majority of us it is not nearly as horrific as we feared. Bear in mind we have to be told about all the common potential side effects for ethical reasons, but no patient will experience all of them. I know one person whose only side effect was to lose her hair. She had no mouth problems, gut problems or any other problems despite her drs telling her daily to expect them! She’s had no sign of myeloma for over 3 years so far since. During my SCT I had a few side effects, a bit of nausea & sickness, alot of diarrhoea and I caught parainfluenza virus in hospital – but my major issues were fatigue and sciatica which have proved a small price to pay as it’s over 4 years since I had the SCT. Since then any health problems have not been myeloma related and the myeloma has not reared its head yet. There may turn out to be other long term consequences of SCT for me, but in the 4 years that I’ve been “in remission” several new treatments have been approved, and newer approaches to dealing with myeloma are further down the pipeline, more likely to be available for me in the future.
In the meantime I’ve had a good quality of life NOW, and was doing so since before day 100 after SCT.
I got up & dressed everyday, before the ward round. Some days it was a struggle to do so. But I did feel better for being dressed.
I know some people are too nauseous to do this, but if you can, I’d recommend it.
I never really got used to my dangly bits! During the day I tucked them into my bra- & intitally wore a soft bralette top at night to tuck them into.
To shower I put the tubes in a zip lock bag, closed it as best I could, folded it in half horizontally, so the zip bit was underneath, then taped it just under my collarbone/upper chest using surgical tape. It did stop it getting wet if I was careful, but was a faff, and I was delighted to eventually get rid of the Hickman line.
Hi Duckboy, welcome to this forum although I know you’d prefer not to be here.
The majority of people with MGUS do not go on to develop myeloma, so hopefully you’ll be in this camp, although I understand your desire to understand enough to get a perspective on what might be.
There are a number of subtypes of myeloma, which are ‘immortal’ plasma cells. Myeloma UK have some brilliant information leaflets which you may have found on the site, if not, have a look.
The different subtypes are monitored in slightly different ways.
The main subtypes are heavy chain myeloma which create paraproteins- usually IgG or IgA (but others are possible) and light chains, although the lightchain figures are not usually regarded as significant. The next common subtype is light chain only myeloma which only produces part, “an arm” of the heavy chain, either Kappa or Lambda light chains. I take it that you have kappa lightchain MGUS.
Healthy people do not have paraproteins in their blood, but it is normal to have a low level of light chains. When you see the normal range, and compare that to one’s own, it is very alarming. I’ve got IgG lambda myeloma and at diagnosis had 10x the normal level of Lambda lightchains (c260) which felt concerning- until I found out that patients with lightchain myeloma often have lightchains of over 1,000 at diagnosis and I’ve met someone whose lightchains were 22,000 at diagnosis.
In lightchain myeloma often it’s the ratio between kappa and lambda lightchains that is more significant than the numbers themselves.
I hope this is helpful & explains why a 15% rise may not be worrying to your Dr.
In terms of what to look out for, a broad approach is to watch out for so called “CRAB” symptoms, high calcium levels, results indicating that you are developing kidney problems, anaemia or bone pain. In addition to these there may be other parameters to keep an eye on, but these can be pretty individual. I keep an eye on my haemoglobin, haematocrit and neutrophils as these tend to be below normal, but as long as they are stable, my Dr isn’t worried.
If you have a Cancer Centre or Maggie’s Centre locally, they may arrange massage sessions specifically for cancer patients by therapists with special training.
Like Sandy123 I’ve been having reflexology, which I have found wonderful.
Hi Kevin, this is something I’ve thought quite a bit about as our retirement plan had been to move to the Dorset/Wiltshire/Somerset area. But that was prior to myeloma diagnosis at age 60. I’ve been treated at an excellent hospital (Addenbrookes, Cambridge) and am very reluctant to leave their care (despite being stable for 4 years), I definitely feel trust and a degree of attachment! Another long term & medically qualified patient told me of lack of facilities such as PET scanners in the South West which has put me off considering anywhere west of the Bristol area. Having heard of sub par experiences from a variety of myeloma patients I would now only consider being within travelling distance of one of the bigger, regional hospitals, and being treated at one. Sadly I do think it makes a difference having a named Dr or consultant who works with lots of myeloma patients. This is a rare disease with fast moving scientific progress being made, so I want my Dr to be up to speed with myeloma.
I suspect that all the “transplant” hospitals offer a good, consistent service to their myeloma patients. But if Cambridge is far enough south, I’d recommend it!
Nuala, glad to hear that you are home and I hope your recovery is straightforward. You are over the big hurdles now, I hope you get a long and healthy period when myeloma (& disease) can be put on the back burner.
Best wishes
Jane
Macklebae, I think my problem with my pretransplant meeting was that I had no means of judging the relative risks (of all the possible problems that I could encounter) that I was told about. Superficially it made me wonder why anyone, even with a life limiting illness, would put themselves through the experience.
It would be unethical for transplant consultants not to warn patients of everything that can go wrong/complicate the experience, but actually there is a wide variety of real life experience, from simply loosing hair (which is the only side effect one person I know had) to dying (which my transplant consultant couldn’t remember happening at the hospital).
In some ways types of questions about the experience of dealing with the side effects are probably best answered by other patients who’ve been through the experience, but the Dr should know the statistical risk of anything you are concerned about.
I think it’s helpful to go into the meeting knowing that the Dr needs to ensure that you understand that the procedure isn’t curative and what the side effects might be, ie it’s a medico legal requirement.
On top of this there will be quite a heavy schedule of tests, drugs, appointments which the transplant hospitals seem to organise very efficiently, but it’s worth checking out any aspect you’re concerned about and perhaps how ‘flexible’ the date of the transplant might prove to be. It may be easier for hospitals to stick to planned schedules now some MM patients have SCT as ambulatory patients either from hostels or home, but I found waiting for bed availability, day after day for 11 days, difficult as I hadn’t appreciated there could be any delay, let alone one that went on, and on, and on.
It may be worth looking up all the current trials on the myeloma UK trials finder, then contacting any that look potentially feasible to discuss whether your father would be eligible, if he is willing to try trials. There is a considerable difference between stage 3 trials, which stand a good chance of benefiting the individual patient, and stage 1 and 2 trials, but all successful treatments have gone through the trials process, and even some of the unsuccessful ones have worked well for some patients.
Hi Busby
Welcome to the forum, and to the unwelcome but friendly world of myeloma.
I’m sorry that I too have no direct knowledge of osteosclerotic myeloma.
However there are at least 70 different genetic abberations known to be associated with myeloma, all of which can co-exist with others. This means in effect that we all have unique experiences of myeloma, so please do not feel alone!
Best wishes
Jane
