Hi Rick, thank you very much for asking after my MIL. Some days are better than others but I think she hoped to feel better than she does at this point. She struggles with pain when she’s up and about and needs a wheelchair if she goes out and about for any length of time. This makes her feel downhearted as she was a very active lady before the diagnosis. Her paraproteins so far have been rising slowly by about 1/2 a point a month. She will have the results of this months blood test on Wednesday. She is still in two minds about whether the stem cell is the right option for her taking into account the risk versus the benefits. It is a very hard decision to make. Do you take any maintenance therapy yourself? She had a month off zometa this month as she had starting feeling sick/diarrhoea and was unsure whether it was this that was making her feel unwell or the curcumin supplements. Do you take curcumin supplements or any other supplements that you find helpful? Did you have any side effects from the zometa? How is your appetite? My mil is eating better than she was but still very small amounts so her weight gain is very slow. Mentally, it has been very hard for both her and us to come to terms with this. You sound very upbeat, did you struggle at all with this? I’m pleased you are able to enjoy golf. Do you suffer with any bone pain? My mil also has osteoporosis. Sorry for all the questions. Any advice you have would be very welcome. Many thanks, Rosie
Hi Rick, thank you very much for your reply. It is very good to hear that you are feeling so well in yourself and back to enjoying golf. My mother in law finished chemotherapy in August. Since finishing treatment she has been trying to get stronger and get back to something of a new normal before deciding which way to take her treatment. However, she is really struggling with bone pain and finds the medication either ineffective or makes her feel very woozy and sleepy. In the last few weeks she has had very little appetite, has lost weight and has felt sick and had diarrhoea, a bit like how she felt during chemo. Blood tests have shown a very slight increase of paraproteins. The myeloma team have given her a month off zometa in case this is causing her symptoms. She has only had a couple of months on zometa so far. She has also recently started taking curcumin supplements which she has also stopped in case this is causing her symptoms. It’s all so confusing. She is very downhearted at the moment as she was expecting to feel better at this point than she does. Are you on any maintenance therapy? Are you still having zometa infusions? Do you take any curcumin supplements? Just wondered if you had any tips for my mil based on what has helped you feel stronger again. Many thanks, Rosie
Hi Taff, thank you very much for your reply. Crumbs, you really do sound like you have had everything thrown at you and yet you are still managing to be positive. An enormous feat and very admirable. I can understand in light of all your other health issues why you would not want to undertake the SCT. My MIL is apart from the myeloma in good health which makes the decision difficult. It would be great if we had a crystal ball to know how she would respond to the SCT. It sounds like your positive attitude is helping you on your journey. It is also interesting to hear your thoughts on antidepressants. If you don’t mind, can I ask if you are still in remission or are you on maintenance therapy? I hope you continue to be positive and enjoy life.
Rosie X
Hi Pat,
Thank you for getting back to me and letting me know about your husband’s medications. It is comforting to know that we are not alone in finding this process difficult and that others are finding it hard to come to terms with their diagnosis. I can completely understand your husband’s frustration that he is having to go through all this while other people who live unhealthy lives seem to get away scot free. It is hard to be positive at times in the face of so much adversity. I had not heard of Maggies but just looked them up. Our nearest centre is quite far away, the nearest is Cambridge and we live in Suffolk but will see if I can find any other local support. I’m glad that your husband is in a better place at the moment and hope that continues.
Rosie X
Hi Pat,
Thank you so much for your suggestions. It is useful to hear how your husband’s experience has been with the stem cell transplant and comforting to hear that he was home in 2.5 weeks. I’m glad he was able to have 15 months without treatment. If you don’t mind me asking, what medication is he taking now? It is also good to hear that the sickness went away for him after the initial treatment finished.
Trying unfamiliar foods is a good idea, as like your husband, my MIL says nothing tastes like it used to.
How long did it take post SCT for your husband to feel relatively well again and enjoy his favourite hobby?
I will see if we have any myeloma info days near us. Like your husband my MIL prefers not to know much detail about the illness so we do as much research as we can and let her know anything that will be useful to her. Often she doesn’t want to hear what we have found out and gets cross with us, even though it is positive which makes it difficult to make suggestions
I hope your husband continues to stay well and that you have plenty of support.
Rosie X
Hi Paula,
Thank you so much for your reply. Goodness me, it really sounds like you have been through the mill. I’m so glad you are on a treatment regime that is working well for you now. It’s great that you are managing to stay so positive.
I will definitely join the myeloma Facebook group and contact Macmillan, thank you for these suggestions.
My MIL was given some build up drinks by the hospital but I’m sure they weren’t as many as 1000 calories. Do you happen to know the name of the drinks you had so we can speak to the team about them?
She is prescribed ondasatron and of all the anti sickness medication she has tried she finds that the better one. However, she still feels sick for at least 4 days of the week after chemo. We’re not sure whether that is because of the chemo itself or the anxiety and worry of what she is facing. No one has ever suggested intravenous anti sickness so perhaps this is something we should be looking into.
She is married and my father in law does his very best to look after her but lately we feel that he has come to the end of his tether with it all. My husband and I visit frequently throughout the week but find it a real challenge to bolster her up when she is so down from the treatment and uncertainty of the future. We come away in tears every time we see her as we feel helpless to change anything. We are expecting our first baby in a weeks time and this has cast a huge cloud over what should have been a very happy experience. Everyone says to us that surely the baby is giving her hope and something to focus on but sadly it doesn’t seem to have had that effect. My brother in law and his family also visit but they have a three year old son who they are trying to shield from the harsh realities of her illness. Before the illness she was out every day, engaging with friends etc. We have suggested that she has her friends visit but she has told us that she would rather deal with this on her own and is shutting everyone out other than immediate family. I completely agree with you that sitting at home on your own in your head is a bad idea but because she feels so ill for so much of the week she has been unable to get out and about. Usually she starts to feel a little brighter around Sunday and then the chemo starts again on a Tuesday. We do take her out if she is well enough on those days in her wheelchair. Sometimes it seems to have a positive effect, other times she cries when she sees other people happily going about their lives.
Thanks again for all your advice, I wish you the best of luck with the rest of your treatment.
Rosie X
