[bigdickspiderParticipant]

My wonderful husband was diagnosed with myeloma on 12/02/15. Started on the myeloma X1 trial, he has been in hospital more than out! he almost managed the first cycle but is now at home, feeling very tired every day and struggling to eat. He cannot face the fortisip/juice etc so at my wits end to try and get him to eat. He manages little amounts of food but not nearly enough.He is due back into hospital next week for a khyphoplasty on his back, I feel like I am bullying him as I tell him if he is not fit and strong enough they won’t do the surgery. Any ideas anyone?

[caroledParticipant]

Hello – don’t know if I can help or not – perhaps someone else can if I can’t. Quick resume – my husband just had his 2nd SCT after 5 years drug free. When he came out of hospital he had no appetite and his taste had completely gone. Started off just giving him what he fancied and easy to eat eg pancakes, scrambled egg, omelette, rice pudding in very small amounts. Changed the taste of the pancakes slightly with syrup/sugar/jam. Soon then seemed to get taste for meat and potato pie with Oxo but again less than a child-size portion. Eventually did get back to normal but took longer than we expected. If your husband can continue to eat just small amounts he will probably be ok.  Perhaps depends why he is struggling to eat – is it the medication, loss of appetite , etc. In my husband’s experience, the hospital food didn’t exactly encourage eating due to the appearance, temperature and presentation!! Please keep us posted  as to how you are going on. Carole

[bigdickspiderParticipant]

Thanks Carole for replying, I think its loss of appetite with him and the chemo completely made him lose his taste buds, but will encourage him to eat as you say just small amounts. He’s having a rest off his meds at the moment to give him time to recover after his last infection and an allergy to 3 of his meds which has resulted in an awful rash and losing skin like I don’t know what, we laughed today as I got the Dyson out and hovered him! He has been given some anti sickness pills so may be have to start giving them to him regularly to allow him hopefully to carry on eating. As you say the hospital food left a lot to be desired. Appreciate your post Jane x

 

[janwParticipant]

Hi, I know exactly how your husband feels about not being interested in food. I weighed about 11 stone prior to being diagnosed with myeloma in 2010, but the weight just fell off whilst I was going through chemotherapy and following a SCT, with my weight reduced to 6 stone. My body looked a mess and finding clothes to fit was difficult. Most of my lack of interest in food was due to feeling and being sick for the majority of my treatment, but for 10 days after SCT I couldn’t even keep liquids down. You just don’t feel hungry and with the lack of taste, most food is like chewing cardboard! I did find that I could taste food which was high in salt, sugar or if sour. Meat left a chemical taste and even sugared drinks tasted terrible. I didn’t drink tea or coffee for three years due to the strange taste it left in my mouth. I found that I could eat tuna on toast, yogurts, custard, rice pudding, some baby meals, orange ice lollies, but that was about all. You need to speak to your husband’s consultant about trying different sickness tablets until he finds one which works.

Eventually after the drugs finished, my appetite slowly returned and my weight resuming over a three year period to over 10 stone. I still tend to pick at my meals and don’t enjoy food as much prior to the myeloma. Many years ago, my mother lost her taste buds for over 5 years due to a severe cold virus. She joined a discussion forum and a university research project which investigated many different ways of trying to get the taste buds to return. She did find zinc tablets helped her resume her taste, but she had to be careful with the doseage. Unfortunately, it’s just a waiting game until your husband finishes the drugs. He will probably just eat small meals for sometime. Try to speak to your GP about prescribing the flavoured fortified drinks, which might help him maintain his weight.

Regards
Jan

[jes1965Participant]

Hi all my partner has just started Revlamid High dose Dex and Another horrid one beginning with C – his appetite has gone and I struggle getting him to eat. Things he will eat are wee tannic with warm milk, ice cream, chicken soup (sometimes), trifle, anything smooth really but not highly flavoured. It’s frightening watching someone suffer but I am determined to pull him through this even though the original chemo VTD stopped working on the 5th cycle.

 

Best at wishes and prayers to all xxxx

[hillbumParticipant]

Hi, my problem is the other way around.

Since MY diagnosis in June 2014 my wife has gone from size 16 down to 8 or 10. She has been through various tests and at one point last year we were both in the same hospital but half a mile from each other! No resolution for her nor any physical reasons, we assume it can only be worry. Perversely , some may be envious, the nutritionists have told her to eat fatty foods, chocolate, ice cream etc!

When I was on my full chemo last year, both in and out hospital, I lost taste and dropped a couple of stone, I viewed that as an upside to the problem. Slowly creeping up again now that I am on a maintenance treatment. Chocolate and inactivity don’t go together. Vicious circle for me, I cannot exercise, even walk more than a few yards, due to osteoporosis and a double spine fracture.

• This reply was modified 9 years, 2 months ago by  hillbum.

[hillbumParticipant]

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• This reply was modified 9 years, 2 months ago by  hillbum.

[cupcakeParticipant]

My thoughts and prayers are with you all with your battles on food and liquid intake, good luck as your persevere.

My darling hubby was diagnosed with Multiple Myeloma in June, sadly his treatment stopped in phase 2 as not showing any effect, that was 2 weeks ago.  The decline in him since June and more so in the last 2 weeks has been unbelievably fast, all out of hands. He has become so weak, and in bed most of the last week.  Palliative team now coming in, he was refusing food, but was agreeing to Fortisp drinks, these are now a struggle too for him.  It us so hard to watch, but little can be done, I don’t think I will have him much longer.  This MM has been so aggressive and undiagnosed for so long, it has taken hold.

 

thinking of you all, as you battle on, wishing you hope. Xx

[jes1965Participant]

Oh cupcake I feel for you. I fear I may be facing the same. God bless you and keep you strong through this horrid time x

[weymouthParticipant]

Hello, I know how hard it can be to get a hubby to eat, I’ve held my breath at times in the hope that what I dish up to him will be to his liking. I have put all of a  “normal” meal in the food processor before now, so it resembles baby food and given that in a small amount.

Good luck and very best wishes

[cupcakeParticipant]

Jes1965

 

thankyou so much, I feel he is starting to go his speech is not clear, since yesterday has been small bleeds in his mouth and nose, and not quite with us, nurse due this morning, I think she will confirm bad news.  How I am going to cope with all this I don’t know, my inner strength seems to have collapsed. X

 

 

[weymouthParticipant]

Dear Cupcake, I’m so sorry you have to go though this. You may feel that your inner strength has collapsed but I’m sure it won’t abandon you, hang in there, my thoughts are with you. You can do this. X

• This reply was modified 9 years, 2 months ago by  weymouth.

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