Hello Jill. Have had a bit of a time of it. The District Nurses were lovely and came out three times a day to do the intravenous antibiotics. Mum was given 3g a day so double the usual strength of oral. She had this for a week and on Monday we went back to the hospital for another blood test. Spent four hours waiting around and then saw a junior doctor who told us that all signs of infection had gone, but she was then given another week of oral just to make sure. Anyway, tomorrow we are back to see the Consultant to discuss starting chemo again. If he doesn't suggest it I will ask him if mum can go on long term low dose antibiotics to prevent this happening again. We cancelled the breast clinic appointment as mum just didn't feel she could cope with it this week, but we have an appointment next week and I am just hoping that they don't find anything. She doesn't need the worry of breast cancer on top of the MM. Mum looks and feels well, in fact she did after the one day that she was ill. Has had a bad pain in her shoulder blade but don't think this is associated at all with the MM as it's on the opposite side to her suspicious breast lesions and the lesion she has in her right shoulder. Hoping that she will be able to continue with her chemo and not have any problems for at least a good period of time. Perhaps we'll be able to get back to our shopping trips on the days when she's feeling better. She's not very mobile but lack of exercise is probably not helping her stiff joints! I hope your mum is doing well.
Love Sandie x
Thanks for your good wishes Tom. Hopefully when end next week comes things will be a bit more settled again and mum can continue treatment.
Love Sandiex
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 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 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
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
Dear Jaqui. I am so sorry to hear about Glenn. I was just reading through his posts from last year which sounded as if he was on the right track. No comments will make you feel any better, but know that there are many others out hear who are either affected by MM or close to family members who are going through the same route. We can all feel for you and send you and your family kind thoughts at this difficult time.
Love Sandiex
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 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 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
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
Hello again Mavis. Just spoken to mum to let her know about the Bisphosphonates working for you. She wondered if you were on this whilst you were on chemo meds, and if so what strength? Mum is on Clasteon 800mg, twice a day which she must take one hour before or after food. She seems to think it is this making her feel a bit sicky rather than the chemo tabs that she took last Thursday. I've suggested tomorrow she tries taking her Lanzoprazole tab when she wakes (anti acid), then having something to eat and then an hour later trying the Clasteon to see if she feels any better. It might just be trying to find the right 'pill order' that suits her. She's not keen on continuing taking a Bisphosphonate forever if they are going to make her feel sicky. Can I ask you if they have told you if you are going to be on Zometa forever now, and if so are you on a more maintenance dose now and does if affect your stomach at all? (How many mg dosage per day? Did you say you were just taking it four times a week now?)
Sorry for all the questions, but it's helpful info that I can give mum which might make her feel better about taking the meds.
Thanks Mavis.
Sandie xx
Hi Tom. I have numerous pieces of exercise equipment. Can't use the exercise bike as I have arthritis in my knee and am told I'm heading towards a replacement. Haven't been able to use the treadmill as I had foot surgery last year and I'm still in pain when walking. Haven't got a dog would a cat do?? Ha ha, the only problem is long walking is out of the question because of my foot and the other one isn't much better, but I'm not having surgery on that until the left one is better which may mean having a second surgery….. I know swimming is good but I don't like it. Hmm, that leaves the Pilates equipment that I bought last year that I haven't used yet. Just going to wait for the results from an MRI scan on my spine that I'm having on Friday before I do anything. Was going to go to the Osteopath but the Consultant's told me not to. Meanwhile I'm putting on weight through not exercising and eating too many chocolates……….
All the best.
Sandiex
Hello Mavis
Thank you for letting me know about your lesions healing. Must have been a real shock to find that you had so many. When you started treatment last year had you been seen in the clinic for some time before that, or were you only picked up as having Myeloma at a later stage? They have been seeing mum for five years with her PP levels gradually increasing year by year. I don't really understand why she has the three lesions now as at her last check up they said her calcium was ok. I would have thought to have lesions the reading would have indicated there was a problem with her calcium. The Consultant did say that with the Bisphosphonate her lesions could heal over so reading what you have said that is very good news as I don't want her leg to break. She thought she would only be having the Bisphosphonate while she was having the chemo treatment, but I think she will have to continue to take it now to keep her bones strong. This is only her first week of treatment and she felt a bit sicky yesterday. She seems to think this is down to the bone medication rather than chemo, as she has to take one on an empty stomach. She has been given Domperidone for the sickness, but hasn't been taking it as a matter of course although I told her she should to prevent feeling sick. I know she has to take so many other meds for other conditions, that it seems hard to fit them all in during they day. Have you noticed any feelings of sickness on Zometa?
I am having an MRI scan on my spine this Friday just to make sure there's nothing dodgy going on. The Consultant said it could be Osteoporosis. I thought it may be arthritis as although I am only 60, I already have it in various other joints. In fact I am under the Osteo clinic as I've been told my knee is heading towards a replacement!!! Best to get it checked out although whatever the results I'm still left with pain in my back which is preventing me doing the things I want to do. I'm hoping that someone can do something or at least suggest exercises etc., Oh what fun getting old (not!!.)Luckily I was picked up with PP levels when they started at just 3.9, and had full body x-rays two years ago which were clear. Although they are now 7.6, because of my back pain the Consultant is being cautious which I am glad about. So, they are keeping a careful eye on me ( I think because of mum as well). It is hard when you have so many areas of bone pain that you put down to arthritis. Because I know of several areas that have been diagnosed I guess it would be easy to overlook something that might not be arthritis.
Mum is full of arthritis as well and she suffers a lot and is very stiff. She used to take anti-inflammatories years ago but eventually they took their toll on her kidneys, and in fact it was when she ended up in hospital with a water infection and then pneumonia, that they discovered she had a problem with her blood. She had to come of the AI and since then her arthritis has got much worse. Apart from that she is well in herself and no-one would know she even has Myeloma.I hope that you are enjoying a good period of remission and stay well.
Sandie x
Hello Sharon. So sorry you hear that you are in the same situation as me. I know my mum has reached 87 so people would say she has had her life, however she looks and acts ten years younger and it doesn't matter how old your mum is you never want to lose her. How awful and sad for you to lose your dad, especially around the Christmas period. It's been a double whammy for you and I can understand how you are feeling as I lost my dad at 70 to cancer and then a year later lost my dear sister to cancer also. That was over 18 years ago and I know it's a cliche, but it does get easier in time. It's very raw for you at the moment. I also have a husband but no children, and although I have quite a large family, there are many family members that don't put themselves out to see my mum let alone do anything to help. This does make me feel very bitter at times. There are a few of us that are very close as we love my mum so very much. Like you my mum is my best friend and I don't know what I would do without her. I try not to think about the future too much as I know she will go one day, but I'm hoping that with treatment she will stay healthy for quite a few more years ahead. There will never be a time when I will cope better but as I am 60 I hope that if she continues to be healthy I will also be getting older. I have always thought I wouldn't live to be too old and strangely enough I am also being seen by the same Haematologist as my Para Protein levels were 3.9 two years ago and are now 7.6. Still low I know and it's not meant to be inherited. I only got checked as I had had a virus which left with me rib pain, and my 'sitbones' had also been hurting. I'd had some infections too. I explained to my doctor and she arranged for the relevant blood tests which found I had a 'grey area'. Since then I've been seen every 4-6 months. They are checking for MGUS. At the moment I am ok although I'm going to have an MRI on Friday as my back has been hurting since I had a bad virus after Christmas. I had already had an x-ray which showed some 'wedging'(whatever that means) on my T11 joint. I'm not worried at the moment as I tend to be the type of person that thinks the time to worry is when you are actually told something bad.
What treatment is your mum on? Is she taking chemo tabs, steroid and Thalidomide etc., I know she was being checked for three years and at what point did they decide she had MM. What were her PP numbers? When you say her PP has gone down after one treatment do you mean after one months worth of treatment? My mum just has 10 chemo tablets once a week and this course will last for 6-9 months. She is having a blood test this Wednesday which surprised me as it will only be a week since she started treatment. I'm assuming bloods can show a change even if it's just a small one, and then they will know they are on the right track. Because of mums age they are being liberal with her treatment as they don't want her to be feeling ill but obviously if the treatment isn't working they then may include other meds. I'm hoping that when we ring on Thursday it will show a PP reduction already. Like you I don't really talk to family about mums condition and that's why it is good to speak with people in the same situation on this forum. I wish you and your mum well and hope that her treatment continues to improve her PP levels which will then put her into remission. There seem to be new treatments coming out all the time for Myeloma which gives us all hope for the future, so try to stay positive. I know you are still grieving for your dad and all the stress of this can't be easy for your poor mum. Bad enough having the treatment but that on top of losing her husband is awful. I can understand how hard it is for you being an only child as you have no-one to share your worries with. When you are so close to your mum or dad no-one can really understand how you feel, only if they have been through it themselves. I hope your husband is supportive and you have some good friends that you can share your feelings with.
Sandie x