Hi there,
My mum has sadly relapsed for a first time and is about to receive her fifth dose of Dartumumab.
She is experiencing real soreness both to her skin and bones. Also a complete lack of energy.
I just wanted to know if anyone else had experienced any similar or the same symptoms?
I wish you all well. Helen
Hello Eve
Wow, Slim sounds like a real fighter and I am so pleased that things are going well for him at the moment. it is amazing how much the human body can take isn't it. I would imagine the chemical compound of our loved ones is pretty mind blowing at the moment!.
Mum was initially very sick with the Clexane however the anti sickness drugs seem to be working so she is now able to eat again.
Nothing seems to phase my mum. She went out for a walk last night with my dad to the end of the road. It is literally only a ten minute walk however she was determined to do it and she did it! I have spoken to her this morning and she is off to a craft type barn today with dad which is really good for them both.
I recently went to the Myeloma info day in Birmingham (which was very good) and the haematologist there said to try and do something nice every day and I keep emphasising this to mum. I think as long as they listen to their bodies, they can continue to live a fulfilling life.
Take care Eve and send my best wishes to Slim
H x
Hi Dai
Thanks for the reply and so sorry to hear that you have been through it as well. How did you find being on the Warfarin? I pressume that mum will be moved onto this shortly. She goes to see her consultant on Wednesday next week so hopefully we will find out then if they plan to take her off the revlamid. I hope not as it appears to be a good drug to be on.
I guess the clots in the lung may have come of the DVT in her leg so we are praying that now they have been found, the clexane will act at dispersing them.
I wish you well for the rest of your treatment
With best wishes
Helen x
Thank you Eve and I am sorry to hear that Slim has suffered from clots as well. Do you mind if I ask if the cause was Revlimid? and also is there anything that mum could be doing at home to ensure she is treating the clots in the most appropriate way? The doctor has said that she will have to inject herself with 40mg of clexane in the morning and 40mg at night.
It is so annoying as she was doing really really well and now this comes along 🙁
Hope that Slim is doing okay at the moment. My thoughts are with you both
Love Helen x
Many Thanks Jet and I am so pleased and inspired to hear that you are doing so well. Long may it continue
Best Wishes
Helen
Hi both,
Thanks so much for the replies. They were really useful. May I ask how long it took to get over the SCT after you left hospital?
Thanks and keep smiling
Helen
Hi All,
Glad to hear that you are all doing so well post SCT. I was wondering if I could ask a bit of a random question. My mum is currently on her 4th cycle of treatment (she is on the Revlamid Trials drug) and will eventually have a STC. My dad would really like to buy her a lap top for Christmas so that she doesnt feel so isolated when in hospital. I have said to dad that I would think that it is unlikely that she will be allowed to take a lap top in as I would imagine that they carry a lot of germs. I wonder if anyone could confirm this for me?
Also, I was hoping that anyone that has had the STC could give me a bit of info on what mum is likely to encounter when she has the STC, how long she will be in hosptial for, how she will feel and how long it will be until she recovers?
Any information would be very gratefully received.
Take care all and Many thanks
Helen x
Hi Helen and Eve,
Hope you are both well. Helen are you still heading in on the 16th for your SCT? Hope they managed to find you a bed.
Mum is not very good at the moment. She has to go into hospital today becuase her liver function test was of concern to the Doctor. They have taken her off all meds while they find out what is up with the liver.
It is so scary. I wish so much that things could go back to normal.
Take care both xx
Thanks Bridgette. I must keep reminding myself that the medication is strong stuff and may take mums body a while to adjust to. It seems crazy that she is taking so much of the stuff as she has always been very anti medication. It is such a shame that she has had this 'blip' following the good news that her PP level reduced to 5.5 after the first cycle.
Every day I wake up and hope and pray that today is the day that they find a cure which means we can get our mum back to her old self and enjoying life.
Anyway, how are you doing?
Take care Bridgett and thanks so much for replying
Best Wishes
Helen xx
Hi Bridget,
Hope you had a good weekend. I am afraid I have another question for you. Mum has had two blood tests; one on Friday and one today (Monday). Each time the liver function result has been 'of concern' to the doctors. They had told her to stop taking all medication and want her to go to see them tomorrow to have further tests and a liver scan.
I am really concerned and wondered if you have heard of anything like this before?
Thanks in advance
Helen
Bridget, you were not rambling at all. Wow, you are so brave. You sound like you have really been through it over the past few years but so glad that you are finding life to be a little more normal now.
It is so frustrating as mum and dad retired together about a year and half ago and they were looking forward to it so much. Now they are faced with this and it just doesn't seem fair. I am sure that this thought passes through many sufferers of the disease.
Mum just spoke to the consultant and he has taken bloods to find out if anything is up and they have also taken her off the Revlamid for a couple of days to see if that makes a difference at all.
I hope she doesn't get taken off it as it seemed to be doing the trick after the first cycle.
Anyway, I hope that you have a nice weekend and keep on posting on here. your advice is so useful and often inspiring.
Take care Bridget
Love Helen x
Morning Min. Really glad to hear that your husband is on good form and long may it continue. I will mention to dad about serving mums food up on a tea plate. Mum decides what she wants for dinner at about lunch time on each day however, when it is presented to her, she often cant face it.
Hi Bridget. Lovely to meet you. I have read many of your posts on here and they have answered a lot of un answered questions.
I really hope that things improve for my mum as she has had a rubbish week. She called the heamatology ward last night and she has been instructed to go to the Gp for a blood test so we are hoping and praying that everything is okay.
I have actually forwarded your message onto mum for reassurance that what she is experiencing can be resolved with (yet more) medication.
Do you mind me asking what stage of stage in the treatment you are at? Have you had STC yet?
Take care both and again, thanks so much for your support. It really helps me and mum xxx:-)
Thanks so much min. I will ensure mum calls the trials nurse in the morning.meanwhile I have told her to keep the fluids up.I think she is reluctant to take any more pills. I wish there was something to increase her appetite. My dad cooks delicious meals bu she just can't face it when it is put in front of her 🙁 How is your husband at the moment?
Thanks again x
Hi all. I am Helen and my mum started the RCD trial a couple of months ago. I must admit it is comforting to read all of your posts allows me to pass reassuring information onto mum. I think you are all so brave and positive and that is half the battle with fighting this disease. Mum went to see the consultant last Wednesday and her pp level has dropped from 16.5 to 5.5 so the doctors are pleased with how she is responding to the revlamid. I hope you don't mind me asking but mum has been suffering from a few side effects and I was wondering if these are normal. She has no appetite at all and has lost a stone in weight, she shakes ( I have seen posts above that say this is a side affect of the dex and today she has been sick and had diarrhoea and not been able to keep any food down. The second cycle finished on Sunday and mum had the bone strengthening infusion on Monday. Any feedback or reassurance would gratefully be received. Thanks so much and I wish you all well with your treatment. Best wishes, Helen
Hi Helen
Really glad to hear that you responded so well to treatment. I hope so much that mum is the same.
She had her radiotherapy today and I think that it has hit her pretty hard as she seems to be in more pain now and went straight home to bed. The radiologists have said that her pain may get worse before it gets better so I hope that she will feel better in the morning just in time for her results from the first cycle! Talk about horrible week!
Take care and all the best for the 15th
Helen
