This topic contains 38 replies, has 7 voices, and was last updated by 
sandie58 11 years, 7 months ago.
Thanks Mavis. That is useful info. Mum's Consultant did say he would give her Bonefos at our last meeting, but when we collected the meds. it was Clasteon in tablet form twice a day. The Consultant had said she would have one tablet dissolvable, and if it made her sicky she could split this into twice a day. I don't know if this would have been better. Today she has had her Lansoprazole and then an hour after something to eat, taken Clasteon. So far she has felt ok but has also taken Domperidone to try to avoid the sicky feeling. I have told her to write everything down and I'm sure she will find the right order in which to take meds eventually. I don't think she would cope with going to the hospital for an infusion four times a week as she gets fed up with her hospital appointments now. I guess they had to do something more radical with you as you had so many lesions and bone problems. I'm sorry your Consultant didn't pick up on all this earlier for you. I don't understand why they didn't do the full body x-rays earlier. Even I had these when my PP levels were only 3.9! I'm glad you didn't suffer too much with the CDT course of meds. I assumed this would make you feel very ill, so was pleased that mum has only just been put on the chemo tabs. She's also a very proud lady and always wears make up and has her hair done, so was a bit worried about losing any hair. I don't think this should happen on just chemo, or at least I'm hoping not. Is Oxycontin still an anti-inflammatory drug? I haven't heard of it. It would be good if there was anything mum could take other than co-codamol which doesn't do much for her arthritis pain, although at the moment I don't think she would want to take any other tabs. Yes it was the AI's that caused mums kidney problems although they seem to be ok every time we see the Consultant. Hope you keep well.
Sandie x
Hi Jill
Thanks for all the info. I am sorry that your mum's PP levels went up again
after all her treatment. I guess we hope that after the meds course at least the PP levels will stay down for a good period so our mums can continued life as normal without thinking about it. I guess all Consultants have a slightly different way of handling treatments. Mum is very strong and doesn't get obsessed with the illness even though she has started treatment now. Just a pain trying to fit in all her tablets as she has to take quite a few others for high blood pressure, thyroid etc., At the moment she is trying to find the best order in which to take her Bisphosphonate, so as not to feel sicky. She seems to think this sicky feeling comes on with this tablet rather than the chemo tabs which she takes just once a week. I'm sure it will get easier with time.
You mums PP levels were about the same as my mums, but I don't know anything about the lambda light chains as they've not been mentioned. Mum doesn't really want to know too much about Myeloma and just carries on life as normal which is probably the right way for her to go. I'm the one who does all the research especially as it might affect me personally one day. I'm the type of person who wants to know everything!!!! I hope you mum stays well for many more years to come. It's good for my mum to know that there's hope for quite a few more years to come hopefully. Although there's no cure they seem to be bringing out new treatments for Myeloma all the time, and I think it's down to just getting used to knowing that she will have to be on more meds and treatments forever now. There's really no alternative is there……I must remind my mum to drink more. She is a devil for making a cup of tea and then leaving half of it. I think we'll have to go back to filling a jug of water so she has a gauge of how much to drink.
Take care both of you.
Sandie x
Hi Sandie,
Just a couple of things – I think you misunderstood Mavis' email as the Zometa bone strengthening infusion is only once every four weeks (not four times a week). It is a better option for my Mum than more tablets and it means the hospital can check her general health regularly at the same time. The only bind is that she has to have a blood test a week before.
Also to say that my Mum did not loose any hair from the chemo but did find her hair slightly changed texture and when she had a perm it didn't hold as well. It did grow back well during treatments though!
I am glad your Mum sounds so positive and hope it continues. When my Mum was diagnosed she got very depressed and it was a struggle to constantly try to keep her going. Each time she has needed more treatment she has been very emotional about it all and as I am the practical type I find that very hard to deal with. I have a sister and brother but they keep out of anything to do with Mum really so it has been hard – I never saw myself as a carer….
All the best,
Jillx
Hi, Sandie,
On the Zometa front, I think it's generally given as an infusion once every four weeks. When I was on it for about four years, I just had it tacked on to my clinic appointment. I only came off it because my kidneys were failing. I now have Bonephos.
On the feeling sick front, has your Mum tried Acupressure Travel bands? You wear them on your wrists. I used them when I had CDT way back in 2006 and also through the 2 SCTs. They didn't stop all the sickness then obviously, but they did make life more comfortable. I would take them off to wash and then after half an hour or so remember that I would be more comfortable if I was wearing them. The added bonus being that they weren't yet another pill.
Hi Jill. Thanks for letting me know about Zometa. Once every four weeks sounds much better. Four times a week would rule your life! We'll face that if they suggest it, but as mums lesions are small at present I think they're opting for an easier medication for mum to deal with. Like your mum, mine has perms and has always complained that they don't take well, but her hair always looks nice. It is very white and fine but with the perm and having it set it doesn't look fine at present. She wouldn't mind the texture changing if it became thicker!!! I guess I am lucky that my mum has always had a strong character and doesn't let this illness get her down at present. We have been living with the prospect of it turning to Myeloma for five years so it wasn't a surprise. I guess it's much worse for people being diagnosed that had no idea. I am always strong for mum too and wouldn't get upset in front of her. I guess it's easy to feel this way because mum doesn't look or feel ill. I know it would be different if she did, having had experience of her coming out of hospital after having pneumonia and she got very down. I hope your mum continues to find the strength to continue with her treatment and doesn't feel too ill, and I know what it is like to not have much family involvement. There are just a few of us that really care about my mum and other family members that don't put themselves out at all to even ring her let alone visit. It does make you feel very resentful doesn't it. My mum is the World to me so I would do anything for her. It's a shame that others don't feel the same way. Keep your spirits up too Gill.
Take care Sandie x
Hi. Thanks for letting me know about the infusions. We did think mum was going on Bonefos but when we collected the meds. it was Clasteon tabs. The nurse did mention the acupressure sickness bands and I must admit I had forgotten about them (bad memory, sign or getting old I guess). We're going to the shops tomorrow so will buy them and give them a whirl. You have been having treatment a long while and I hope you are still well at present. Are you having a break or are you still on meds?
Sandie x
Hi Sandie,
Glad others have put you right about the infusion being every four weeks, not four times a week!! I find it much better than the time contstraints with the tablets.
When I have a Consultant's appointment they always arrange the two things together. Mind you, if yor Mum is reliant on ambulances for transport, as I am, she may be better off not having to make the additional hospital visits even if only four weekly. If your area is the same, waits for a return ambilance can take upto four hours.
What I have read says Zometa is more effective than Bonefos, but I guess it is what your system can take.
Do hope your Mum's feeling of sickness subsides. On the few times I suffered I found Metocloppramide tablets really helped.
Love to you and Mum. Your Mum sounds a lovely lady.
Mavis x
Hello Tom. I have had my MRI scan and am awaiting results. Mum has taken her second lot of chemo tabs and has felt a bit sicky this time around. Still not sure if it is chemo or the Clasteon tabs. I've suggested she take Domperidone three times today just to see if they work for her. Previously she had only been taking one or two as she has to take so many other meds. We'll be seeing her Doc before the next appointment with Consultant, so will mention it it him too. I know a lot of people have Metaclopramide for sickness. Have you had experience of sicky feelings with Bisphosphonates? I keep meaning to start Weightwatchers but still attacking the sweety drawer!!!!!!!!I'm sure I'll do better in Summer (if we get one this year of course)Keep walking the dog!
Sandie x
Hi Mavis
Have you had any problems with using Zometa? I've just read about someone getting osteocronosis in his jaw. Can't understand why anyone would get this when the meds are meant to strengthen the bones! I nearly always manage to go with mum on her appointments, just keeping away if I am ill, but other family are on hand to take her. It must be a pain to have to rely on ambulances!!
Mum has taken her second lot of chemo tabs. and has felt a bit sicky still. I think it is affectiing her taste buds as she usually has a sweet tooth, but is finding things too sweet at the moment. Still not sure how much is down to chemo or Clasteon. The Consultant is going to give her a capsule next time that she can open and dissolve in water. Not sure if that will still be Clasteon or Bonefos(he did say that was what mum would get!)The nurse told me it is all down to the NHS and what is available and cheaper!!
Hope you keep well. Are you off treatments now for a period of time? My mum is the best. Everyone loves her as she looks like the typical little white haired lady with a kind face. I love her so much………..
Sandie x
Hi Sandie
I hope the MRI has good results for you 😉 as for Mum being Sickie
To be fair I only had the sickness when I had my SCT and it was for a couple of months
I was using Sick Tabs, keep going in that sweetie drawer am sure it is good for us lol.
Take care and love to you both
Tom Onwards and Upwards xx
Hi Sandie,
Sorry to hear your Mum is feeling a bit sicky, I think it is most likely to be the cyclophosphamide as they do the same to my Mum. She takes Metoclopramide twice a day which seems to help, she only really notices it the couple of days after she takes the cyclo but I have told her to take the anti-sickness tabs every day as it keeps up the levels in the system and is simpler for her. It also seems to get better after she has been on the tablets for a while so I guess the body gets used to them. How much cyclo is your Mum taking each week, mine takes 500mg (10 50mg tablets).
Take care,
Jillx
Hi Jill. Just spoken with mum and she is feeling better today. She takes 10 of the Cyclo once a day every week, so same as your mum 500mg total.Last Thursday was her second dose, so couple of free days before she takes the next lot. The Consultant gave mum Domperidone rather than Metoclopramide, but I think they both work by emptying out the stomach. As long as she has some good days I think she will be able to cope. Mum doesn't get down or even think about having Myeloma, just takes the pills and goes with the flow. I guess it's easy for her to do that at the moment as she feels well and hasn't undergone all the treatment your mum has. I'm sure overtime it must get your mum down, but you said she was diagnosed five years ago and was monitored for some time before that, so that is good news for you that she is still going strong. There isn't really an alternative to just continuing with treatment when it is needed, but I hope your mum continues to do well and keeps her spirits up. By the way, why did they decide to give your mum penicillin every day from the start? Did she suffer with infections already. They can make you feel sickly especially if taking on an empty stomach before food. My mum is still taking her temperature, so any signs of it going up and we would be straight up the hospital. Love to you both.
Sandiex
Hi Sandie,
Glad your Mum is feeling better. My Mum has been taking Penicillin every day since she was originally diagnosed, not because she had any infections but just as a precaution according to her consultant. I think it helps prevent anything like a cold developing into an infection. It certainly seems to have worked for her, she has not had any kind of infection and seems to be able to deal with the odd cold or tummy upset very well. The penicillin doesn't seem to bother her in terms of side effects.
Mum seems a lot better this week in terms of her current treatment (Cyclo, Dex and Revlimid) I think she is getting used to it all now! The worst bit is really the Dexamethasone so it is good that your Mum doesn't have to take that one!
Glad to hear your Mum keeps positive, it is the best way to be at their age. My Mum is better now, unfortunately she had just dealt with the death of my stepfather when she was diagnosed so I think that was a big part of her initial depression.
Love,
Jill x
Hi Jill. Have had a very stressful few days. Mum was doing fine up to last Wednesday when her doctor asked to see her for a chat. He wanted to make sure we had all the information to do with Myeloma, and I told him we knew exactly what was going on. Then he read the end of the Consultant's letter that said the MRI had picked up some lesions in the breast that they thought were just cysts, but suggested she be seen by the breast clinic to make sure. So, that is another appointment we are waiting for. The next day mum rang me to say she didn't feel well and I rang my brother to pop in until I could get in to her. She looked awful, felt cold and shakey and her temp. was 38.8. So straight to A & E where they checked her thoroughly and gave her some IV antibiotics. They took a chest x-ray and urine sample as they didn't really know where the infection was. Mum didn't have any cough or cold symptoms or urine problems. They did find some shadowing on the right side of her chest. Don't know if this is infection or the cysts that they saw previously on the MRI scan. They took some blood cultures for testing, gave her two packs of oral antibiotics, and after 8 hours we came home. The next morning mum looked her usual self and her temperature was normal so we thought good, took the first antibiotic, and then got a phone call to say they had found something serious in her blood culture and we had to go back. She stayed in EAU for two days, plugged into liquids and IV ant. and then moved to a ward side room as they were barrier nursing her. She did have diahrroea as well so they were being careful. Don't know whether that was due to the antibiotics or infection (seems to be getting better now). They just told us she had sepsis in the blood but she wasn't Neutropenic luckily, that would have been much more serious! She came out on the fourth day but was told if she came out she would have to come back for IV ant. for two weeks! That wasn't correct as when we read her notes it said one week IV and one week oral. They had found that Amoxcillan seemed to be the one sensitive to the Strep. bacteria they found, so hoping this does clear it up. We had to go the hospital 8:00 this morning and again this afternoon but luckily they have arranged for the district nurse to come 8:00 this evening and then she will come in three times a day to do the IV. Sunday we go to the hospital for two hours as I think they are going to re-do the bloods just to make sure the ant. are working before they put her on the last week of oral. (not a good time as it's Mother's Day).What a fiasco it's been!! Very stressful for mum as they kept moving her about although most of the nurses very really nice, and her BP was very high, and still is. I'm keeping an eye on it as home. For the rest of the week she should be able to rest and hopefully it will come down. The worrying thing is that she had only had two courses of Cyclo. and Clasteon, and was in fact due to take the third on the Thursday she went to hospital. She still has to see the Consultant next Thursday and we will discuss where we go from here. I'm thinking that he may put mum on long term antibiotics like your mum. We couldn't keep having this happen every couple of weeks!!!
Anyway, mum is feeling fine at the moment, and I'm just hoping that she at least gets a good period on chemo without this happening again. We still don't know if the Sepsis was caused by her picking up someone's germs at the doctor as her immunity is lowered, or whether it's just something that could happen anyway (the latter would be more concerning). We have been told that when mum goes to the hospital for blood tests in future, that she should tell them she is having chemo so she is seen straight away and not sitting with a crowd of people. Trouble is this could apply to going anywhere, shopping etc., although doctor's surgeries and hospitals are probably the worst places for her to be. She can't become a recluse for 6-9 months as she will become depressed.
I hope you mum is continuing to be well.
Sandie x (Would be interested to hear from others as well that may have experienced something like this)
Hi Tom. Well had results back and thankfully not connected with Myeloma. I would have been a bit shocked if it had been as my PP levels are only 7.9. Because Mum has MM, the Consultant was just being careful. However, I'm now being tested for Osteoporosis as one of my vertebrae had fractured which is not good news! This all happened after a bad cough, although I have had problems with my spine over a period of years, but generally only affected me in summer when I bent over a lot doing gardening. Still have pain spreading into my ribs and can't twist properly but the Doc says this is probably my body's way of protecting my spine. Looks like I will be put on Bisphosphonates to protect any further damage but the Doc doesn't think that will help the damage I already have which is a bit depressing. Will have to seek advice on what excercise I can do now. Mum is feeling well now and we see the Haematologist tomorrow to discuss re-starting her chemo after the sepsis. Hope you are doing well.
Love Sandie x
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