Thank you for your positive words and encouragement. You don't know what that means to me, or I guess you do. Sometimes hard to realize that finally someone understands.
Received some bad news today. He will not be going in for transplant as soon as we thought as an emergency patient came in and required it more. So we are still waiting for a bed. His treatment ends on the 28. As he is not eligible for more Revlimid the doctors are looking to start him on a new med. not sure what yet. Meantime I watch as he slips away.
He is sleeping pretty much around the clock and only able to eat and drink in small amounts. I know the sleeping is mostly the meds and is good for him but I worry about the eating and drinking but the act of it tires him out and he can only tolerate small amounts.
Then he fell today. Watching to see if he may have fractured something.
Tomorrow going to try him on smoothies with spinach and fruit. Hoping that maybe he can tolerate that and it won't be so exhausting. Has anyone else experienced not being able to eat due to exhaustion and if so what would you recommend.
Forums
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: 47 year-old, diagnosed in May
My heart goes out to you and your boy friend. I pray that a treatment that works is begun quickly.
I think that a smoothie is a good idea, but make sure that it has plenty of protein in it. Look at the meal supplements and then add what you feel would be helpful. My husband, who was dying of lung cancer at the time, loved Carnation Instant Breakfast with an egg, extra chocolate and ice cream added to it. Whatever he would eat/drink I made for him so that we could try to keep some weight on him. A couple hours after that he had enough energy to eat real food. You might also try using Greek yogurt for the base of the smoothie since it has a high level of protein, usually around 12 grams.
Sending the 2 of you lots of love and prayers,
Nancy in Phila
I think that a smoothie is a good idea, but make sure that it has plenty of protein in it. Look at the meal supplements and then add what you feel would be helpful. My husband, who was dying of lung cancer at the time, loved Carnation Instant Breakfast with an egg, extra chocolate and ice cream added to it. Whatever he would eat/drink I made for him so that we could try to keep some weight on him. A couple hours after that he had enough energy to eat real food. You might also try using Greek yogurt for the base of the smoothie since it has a high level of protein, usually around 12 grams.
Sending the 2 of you lots of love and prayers,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: 47 year-old, diagnosed in May
Thank you nancy. Sounds like a great idea. Ice cream does make everything better! Not sure how receptive he will be when I tell him to drink his breakfast but at this point he is willing to try anything. Hard to go from a bacon and egg kinda guy to green smoothies. Sometimes he really finds it hard to adjust to his new reality.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: 47 year-old, diagnosed in May
Hi Terrilyn,
There was a time when my meals were delivered via a straw, there have been times when I have been on a low residue diet (no poo food), times when I have been a diabetic and times when I needed to eat as much fibre as I could.
In your boyfriends current situation he needs high energy food with the essentials and a maximum punch from vitamins and minerals. I used to have a drink called Fortisip (Nestle?) that contained most of the things the body needs (they first gave it to me in hospital). Protein is essential, perhaps you could check out the body builder protein powders and add extra (ice cream, fat etc). Of course he also needs to like it - some of the food I have been offered would set me gagging.
All the best,
Libby
There was a time when my meals were delivered via a straw, there have been times when I have been on a low residue diet (no poo food), times when I have been a diabetic and times when I needed to eat as much fibre as I could.
In your boyfriends current situation he needs high energy food with the essentials and a maximum punch from vitamins and minerals. I used to have a drink called Fortisip (Nestle?) that contained most of the things the body needs (they first gave it to me in hospital). Protein is essential, perhaps you could check out the body builder protein powders and add extra (ice cream, fat etc). Of course he also needs to like it - some of the food I have been offered would set me gagging.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: 47 year-old, diagnosed in May
Hi Libby. Thanks for your replies. The gag factor is something I am trying to avoid. Once his stomach turns he has no chance of getting food in. Today he did enjoy a smoothie of spinach avacado blueberry Greek yogurt frozen blueberries black berries and strawberries. He drank almost 3 cups which is a lot for him. He can't have bananas right now due to diarrhea but I found with the avocado the smoothie was still creamy. Now to find receipes that he will enjoy. Thinking of adding strawberry boost to it. He is on the high protein one.
Good news he is actually awake tonight and somewhat alert. He tried to eat soup tonight but that was not quite as successful so back to oatmeal for dinner.
Looks like he will be on a smoothie diet for a bit. So now to keep them interesting.
Good news he is actually awake tonight and somewhat alert. He tried to eat soup tonight but that was not quite as successful so back to oatmeal for dinner.
Looks like he will be on a smoothie diet for a bit. So now to keep them interesting.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: 47 year-old, diagnosed in May
Here is the quick update. The smoothie diet is working wonders! I still make meals and he still attempts to eat them but if he is just too tired we grab a smoothie. His fav is frozen blueberry cherry blackberry mix, a cup of spinich, half an avacado, a cup of strawberry activa and a strawberry boost. His blood work has been great and he even gained back a pound!
Got a call from the hospital And he was approved for one more cycle. Said he will be going for auto transplant with 2 weeks. The centre he is going to only have 16 beds so there is quite a wait but he is on the emergency List
He is still tired but not as bad. He has been on Revlimid daily with no breaks since mid Nov and Velcade twice a week so tired is to be expected. Down side is between the dex breaking down his muscles and his inactivity he has little strength in his legs and is now back to using a walker.
Got a call from the hospital And he was approved for one more cycle. Said he will be going for auto transplant with 2 weeks. The centre he is going to only have 16 beds so there is quite a wait but he is on the emergency List
He is still tired but not as bad. He has been on Revlimid daily with no breaks since mid Nov and Velcade twice a week so tired is to be expected. Down side is between the dex breaking down his muscles and his inactivity he has little strength in his legs and is now back to using a walker.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: 47 year-old, diagnosed in May
I'm glad that your boyfriend is tolerating the smoothies and has gained a little weight. I'm sending you both healing energy to make it to and through the transplant without too many problems. Great news that it's going to be in a couple of weeks.
Hang in there,
Nancy in Phila
Hang in there,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: 47 year-old, diagnosed in May
Seems we have turned another corner! The last two days his energy is up to the point that he is able to do some of the paperwork for his business and make dinner! Loving this upturn.
I am still working full time, taking him to hospital daily for chemo and blood work as well take care of house meals kids etc. So nice to come home to him up and smiling. Still waiting for call to go to transplant but have been assured it will be within two weeks. We are also waiting for our grandson to arrive. So hoping he is born before we have to leave for transplant but what will be will be. Hoping February is our stellar month
I am still working full time, taking him to hospital daily for chemo and blood work as well take care of house meals kids etc. So nice to come home to him up and smiling. Still waiting for call to go to transplant but have been assured it will be within two weeks. We are also waiting for our grandson to arrive. So hoping he is born before we have to leave for transplant but what will be will be. Hoping February is our stellar month
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
Re: 47 year-old, diagnosed in May
After a few days of good energy his platelets fell and he got a fever and diarrhea. After several cycles of Velcade twice a week and Revlimid daily with no breaks his body just couldn't take anymore.
Now the good news! Got the call for SCT! Got the call yesterday morning. Rushed to the centre 3 hours away and he had his pic line inserted. Did the high dose chemo today and SCT tomorrow morning. The nurses and team here are amazing.
Feeling confident this will work. So far tolerating the chemo. They have him on 3 separate anti nausea. Also really rehydrated him. He is feeling okay.
Fingers crossed that there is no infections/ complications. What a roller coaster this disease is.
Now the good news! Got the call for SCT! Got the call yesterday morning. Rushed to the centre 3 hours away and he had his pic line inserted. Did the high dose chemo today and SCT tomorrow morning. The nurses and team here are amazing.
Feeling confident this will work. So far tolerating the chemo. They have him on 3 separate anti nausea. Also really rehydrated him. He is feeling okay.
Fingers crossed that there is no infections/ complications. What a roller coaster this disease is.
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Terrilynnn - Name: Terrilynn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: May 18 2013
- Age at diagnosis: 46
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