[tomParticipant]

Hi Sandie

Now do I say well done in having Osteoporosis :-S Yes i think I should 😀 .
Its not good but its Better than having MM :-S .

I think you should ask if R/T will help ease the pain in your back??, let us know what exercise they say you can do as am sure it will be same as us MM folk should be able to do 😉 .
Am Pleased your Mum is doing well and i hope the Top Man says Mum can restart the Chemo as if you and Mum are like me I hate waiting for treatment.

Stay Well and say Hi to your Mum for me
Love Tom Onwards and Upwards xx

[sandie58Participant]

Hi Tom.
Mum saw Haemo. Consultant yesterday and she is continuing with her Amoxicillan until Monday and then he is putting her on maintenance Penicillin of 250mg twice day for the duration. Makes sense as hopefully this will prevent further infections. She had only managed two weeks of chemo and her blood test showed that her PP levels had gone up from 32 to 34, but then I wouldn't have expected too much after two weeks. Mum is re-starting chemo next Monday and then we go back after a new month of chemo. He did say that if her PP levels hadn't gone down at all he may put her on some steroids. :-S. Not sure mum is very happy about that as she worries about her weight. Would steroids help her osteo arthritis pain do you think and what side effects could she expect if she goes this route? Anyway keeping fingers crossed the chemo alone will be effective. Our Haemo Consultant is really lovely and asked me how I was doing too. Good news my spine has nothing to do with Myeloma of course, but not happy that I have a fracture and one of my vertebrae has gone wedge shape. Still have pain into my ribs but not as bad as it was a month ago. Bit worried about going on Bisphosphonates as I've read about Osteocronosis of jaw:-( . My jaw isn't brilliant now, however Consultant said for Osteoporosis I would be given something milder to make my bones stronger. Wouldn't repair the damage but hopefully wouldn't get any worse. He did mention that if the pain got worse they could do Kyphoplasty? the same as MM people. I saw my Ortho Consultant today as my right knee needs a replacement:-( , but I've got too many other things going on this year to even consider it. I'm only 60 but osteo arthritis runs in family. Don't know anyone else in family with Osteoporosis, and I certainly don't fit the criteria, so don't understand why I have it. Anyway, waiting for a DEXA test to see if I do have it and how bad. Now I'm being a bit dim I know, what do you mean by R/T? I really do need advice on what exercise I can do now as I think I need to strengthen muscles as well as build bone. Hope you are well and in a period of remission.
Love Sandiex

[jillsParticipant]

Hi Sandie,
Glad to hear things went OK with your Mum yesterday and that she is going to have the Penicillin – this is the same dose as my Mum who has been on it for about 6 years now without any problems. Just responding to your question about Dex – this does boost the effect of the cyclophosphamide and is normally only taken once a week as a relatively low dose for older patients. My Mum finds it makes her a bit more energetic for a day or so (as her consultant put it "makes you want to do the ironing") but then she has a bit of a low period for a day – this is just due to the effect on the blood sugar levels I think. She hasn't had too many problems with weight gain at the low dose (she has 20mg once a week) although she did with a higher dose which does lead to an increase in appetite! I think they normally also prescribe Omeprazole to take with the Dex – this helps prevent problems with stomach acidity caused by the Dex. Dex does provide some pain relief although this is only for a day or so if it is only taken once a week.
Love to you and your Mum, Jillx

[sandie58Participant]

Hi Jill. Been meaning to reply today but had the BT engineer in for the afternoon updating my broadband. Thanks for letting me know about Dex. Mum was worried about weight gain as she is already quite 'round' to put it nicely. I would rather her be plump than thin though as she looks healthy and pretty, and at least if she is ill has some 'reserves' to fall back on. I'll take a note of what your mum is on when next we see the Consultant. I'm glad he's put mum on penicillin. Shame she wasn't given it at the start as she wouldn't have had the sepsis, but never mind, hopefully from now on she will be fine:-) Mum is already on Omeprazole, and has been since she had a bleeding ulcer after her knee replacement a couple of years ago. Hopefully this would stop any problems. I'm hoping that when we go back in a months time her PP levels may have dropped a bit. If she can avoid taking steroids as long as possible that would be good, but if they haven't dropped I think the Consultant suggested adding a bit of steroid in, which suggests a low dose. Mum always tends to be tired but then she takes various pills including Co-codamol for her arthritis, and I take those as well so I know they make you tired. Plus of course she is 87, so it is to be expected that she will be tired at times.
I hope your mum is keeping her spirits up and keeping well.
Have a good weekend.
Love Sandie x

[tomParticipant]

Hi Sandie

Am pleased your Mum is getting better and hope the next round of Chemo is good for and to her 😀

As for the steroids well we all differ in what and how we cope with treatment but am sure am safe by saying a weight gain is civen on steriods (i did but i had lost a lot of weight due to MM (and I thought it was my diet ha ha) as for the steroids helping the osteo arthritis pain ?? I dont know all I do know is that it cam mask an infection so keep an eye on your Mums Temperature.

New Knee am sure i need two and am only 57 lol, the Bisphosphonates before you go on them you should have your teeth checked and anywork done on them, before, when on them you can still have them cleaned and filled I think the only thing you cant do is have any removed, you will need to be of the Bisphosphonates for a bit of a time.

You have got a busy time ahead of you all, Hope it all pans out Just right

Love Tom Onwards and Upwards xx

[tomParticipant]

Ps R/T is Radio Therapy the tell me its good for the bones 🙂 xx

[DaiCroParticipant]

Hi Sandie,

I have followed your thread throughout but these good people seem to have everything well covered… excepting one thing which I think has slipped through the net (forgive me if it has not and I am repeating advice already given). :-/

Liquids intake – 3 litres a day minimum… your Mum definitely needs this. MM sufferers are prone to kidney problems and the 3 litres a day keep the body both hydrated and washed through. It doesn't have to be just water… tea, coffee, squash and soft drinks, fruit juices and mineral waters, still or fizzy all count… but she needs to spread the amount throughout the day. It is also good for washing away the debris that can lead to stomach upsets and 'sicky' feelings. 😀

Talking of which,,, I took Bonefos 800mg twice a day for nearly four years until last month when they started me on Zometa (I had slipped through the net apparently and should have been on Zometa for the past 18 months – but hey ho!). I have never heard of anyone being sick from Clodronates in the 3.5 years on this board (perhaps they have but not reported here)… which leads me to suspecting the Chemo tablets which often kick in a few days after taking them as they get to work around the body. Sickness tablets such as Domperidone are meant to be taken as a preventative, so it might be a good idea for your Mum to start taking them a day before her Cyclophoshamide is due and then for three days after then a short rest before repeating the process… I am pretty sure that that will be helpful. Also, peppermint tea and high level peppermint sweets to suck as and when she feels like it – both of which I found helpful. I take a small flask of peppermint tea to bed with me most nights. 😎

If your consultant is thinking of steroids i.e. Dexamethsone (hereby for ever to be known as Dex) then tell your Mum to grab hold and be grateful for them… they are one of the most commented on medication… running about 95% negative (side-effects, me included, especially when I get little to no sleep the following night but the truths that Dex is a wonder drug and despite our moans and groans it is an extremely helpful aid and back up to the chemo… which is why it accompanies [b]'all'[/b] the available treatments following the SCT, or straight on to them if a SCT is not offered (your Mum will not be offered a SCT as the normal cutoff is 70 years of age with a few exceptions for people who are extremely fit for their age (we have at least 2 on here who sneaked a SCT for being 'Supermen', they know who they are.;-)

And lastly I think your Mum is wonderful for putting up with MM at her age… not because it is a terminal illness (she could last 5 years or more with carefully selected treatments) but because it is a traumatic disease to be associated with, especially the side-effects, most of which can be lessened by following the medication advice and the experience of people ahead of her on here. Tell your Mum she is my new hero(ine).8-)

Regards and best wishes for the treatment plans for the both of you.:-)

Dai.

PS. This site and phone calls to the resident nurses at MUK are all you will ever need for coping with MM – trawling the net will bring confusion and fear in equal measures – don't do it!

[jillsParticipant]

Sandie,

Dai as always provides very wise and helpful advice. Fluids – yes, and keep reminding her as older people often don't drink enough – if she is not too mobile a jug or bottle of water next to her so she can help herself without having to go to the kitchen might be a good idea. Also agree very much on the anti sickness medication – take it the day before the cyclo as well and that does seem to do the trick. My Mum now takes them twice a day every day as that seems to work best for her.
Take care, Jillx

[sandie58Participant]

Hi Dai & Jill.
I think the reason why mum's Consultant said drink 1 1/2 litres, is because she has two heart murmurs and poor circulation, hence the swollen legs and ankles. I think he felt that to drink more would put extra strain on her heart. I agree with you, I think the 'sicky' feeling is down to the chemo and not Clasteon, and I think mum realises this now. She won't be receiving her Zometa infusion until her next Consultation, and hope they can find a vein ok, as she had to keep having her canula moved around when she came out of hospital and veins were disappearing. Hopefully by another few weeks time they will have popped up again:-D. Forgot to mention to mum about taking Domperidone the day before starting chemo again. She re-started Monday and took 2 x 3 times a day Monday-Wednesday. Will check on her again later to see how her stomach is. I know they say to take for 2-3 days, but is there any problem in taking them every day?
We have been dealt a bit of a blow. Following mum's MRI for her bone lesions, it showed up some nodes in her right breast and they suggested she get them checked out at the breast clinic. We went yesterday and she had a mammo and ultrasound and the nodes were just cysts. However, the mammo showed a lump in her left breast which they were concerned about so they did a core biopsy and we go back for results on Monday. Obviously the MRI hadn't covered her left breast, and had they not found the nodes in the right we wouldn't have been referred to the clinic and they wouldn't have done the mammo. The last time mum had one of these done was about 40 years ago. The Consultant did say Myeloma can go into soft tissue and that's why they needed to do the biopsy, however I have googled this and it is very rare. I'm worried now that it may be a breast cancer and mum really doesn't need something else to contend with. Even it it was she wouldn't have surgery, but they did suggest putting her on Tamoxifen (another tablet to take to add to her many others…)
Trying not to worry too much until we get the results, but woke with it on my mind and just feeling quite down. Not made any better by picking up a voicemail from a friend to say her husband's mother had just passed away. Trying to keep strong for my mum as I don't want her to see me getting upset. We were dealing ok with the MM and treatment even after the sepsis, but if this is a separate cancer now it puts much more worry on the whole situation. I know mum is 87, but the thought of losing her makes me feel ill and my stomach is taking the strain. It sounds strange to say 'hoping the lump will be down to Myeloma rather than breast cancer'. My mum's mother died from breast cancer in her 40's and my sister died from breast cancer in her 40's. I guess the % of women who get this cancer is really high and of course the older you get the more chance you have of developing it. I had thought mum's generation had missed it when my sister was diagnosed. I am praying for some good news on Monday….
Love to you both
Sandie xx

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