Myeloma

Myeloma is a cancer of plasma cells in the bone marrow. If you're suffering from myeloma, or know someone who is, join this support group.

low testosterone

Will6
Posted by

Hello again

It went quite well really and the haematologist was very thorough. We all agreed that as hard as the sweating is to cope with we would continue with the Revlimid on a lower dose initially and also a staged return to Dexamethasone. The ribs have to be left to heal alone. The MRI and the other tests are due to take place the first week of January. The Haematologist was pleased hubby has started  on the antidepressant. We just have to keep trying but oh it’s hard now. We’ve had some decorating done this week and also our new furniture arrived for the dining room  so I’ve been busy making everywhere look festive ready for the nephews and their families coming to lunch onSunday. I went to see our seven  year old great nephew in his school play on Tuesday and today I took mum out for a sandwich and tomorrow the great  niece and nephew are coming for an hour to decorate their Christmas cakes. I do hope you are doing OK and that you are looking forward to your Christmas. Please do take care and if it’s OK we’ll keep in touch eh? 
June x

Johnty
Posted by

Dear I’m so glad to hear everything went well with the consultant, good communication is the key to everything and reduces anxiety. Good luck with the tests in the new year and I hope you have a lovely Christmas. Update me when you have more news. I hope I have been of some help to you both.

best wishes

jane

 “ A trouble shared is a trouble halved “
Will6
Posted by

Oh dear Jane never doubt the power of your concern for others. I must admit to being tearful this morning after another long night and hubby feels desperate this morning so it means the world that someone is thinking of us. 
Bless you

June 

Johnty
Posted by

Dear just checking in on you both and to wish you all the best for the new year. I hope you managed to have a lovely Christmas despite everything that’s going on. How are things with side effects at the moment any better ?
all is well at this end and had a nice Christmas with husband who cooked the dinner, and I survived to tell the tale !

best wishes

jane

 “ A trouble shared is a trouble halved “
Will6
Posted by

Hello Jane and happy new year to you and yours.

Our Christmas was Ok really but still marred by the pain hubby is feeling 24/7 bless him. We went to visit the great nephews and niece (plus their parents of course) which was lovely but we only managed a couple of hours out and then back to bed. He’s had a change of meds but still no relief so tomorrow I’m contacting the team to ask for some help. We are going to hospital in the morning to see the endocrinology team for tests so hopefully that will help. Yesterday  our eldest nephew celebrated his eighth birthday and spent the night with us whilst the rest of the family partied. He is such a precious young man and spreads joy wherever he goes so it was a wonderful evening. Hubby slept through most of the evening but we woke him up at five to midnight to watch the fireworks on TV. Such memories are so precious. 
I’m glad your Christmas dinner was good. Thank you so much for keeping in touch. Take care.

June x

Johnty
Posted by

Dear June, I’m glad to hear you had some nice experiences over Christmas despite everything that is going in. It’s lovely to be around the children but they have so much energy they can exhaust you just by being in the same room with them ! I hope you get some clarity soon on why your husband is experiencing almost constant pain, I think doctors sometimes forget that not all patients respond to therapy in the same way and it’s not adequate to just brush people off with, oh it’s just side effects. Please keep in touch and let me know how you get on at the hospital.

best wishes

jane

 “ A trouble shared is a trouble halved “
Johnty
Posted by

Dear

just checking in to see how you are both doing. It’s been a while so I hope you have a clearer picture now about everything that is going on with your husbands myeloma treatment. I would love an update if you feel up to sharing.

best wishes

jane

 “ A trouble shared is a trouble halved “
Will6
Posted by

Oh Jane how kind of you to ask.

Things are quite difficult still and I keep losing hope but bless him my hubby is just plodding on. I had to go to hospital today for a my eye check and hubby needed his bloods doing for the three week testosterone blood check and his bloods in preparation for his infusion next week. He was too poorly so I went alone and rang for the district nurse to come do his tests. I’ve never done that before but he simply couldn’t go out. It seems the testosterone gel is working as his sweating is reduced to a very tolerable level and with that comes a better sleep for us both. He is managing up to three hours a time now which is helping us both. 

Being  school holidays I was caring for the great niece and nephew which is always a joy. Ruby aged ten asked to stay with hubby whilst I went to hospital and her eight year old brother went with me. Ruby was a star and gave him a biscuit and juice whilst I was away. She was proud of herself and so were we. William held my hand throughout my test and encouraged me to giggle a lot. We called in to see the staff on the haematology unit as well and had big hugs from the staff to keep me going. 

As for the myeloma we went to see the specialist last week and were dismayed to find he has lost weight again and his levels are not dropping yet so another rise in chemo. This is making him very sad and he says he feels guilty for putting me through this. He always thinks of me bless him.


As always we are keeping on trying our best to be positive and to keep smiling.and hugging. Contact with people who care helps so much so again thank you Jane for caring.

love to you all xx

Johnty
Posted by

Dear June 

how wonderful to hear from you, I’m so glad to hear the sweating has improved somewhat and hubby is getting some reasonable sleep.

your great niece and nephew sound adorable and a joy to have around, 

it sounds as though you have created a good rapport with your haematology staff which is always very helpful, my favourite nurse is a absolute godsend, always there with a hug if I need one.

i find that weight  fluctuations on chemo are quite common and it’s worth trying to introduce high calorie snacks in between meals if you can manage them.

i understand the whole “ I don’t want to be a burden “ thing, but it’s just the cancer talking, we don’t really feel like that deep down, so don’t take it to heart. Don’t loose hope, it can sometimes take a while to get the medication levels right, as long as you continue to raise any concerns that arise with side effects with your doctor things can always be tweaked.

as for me all is stable and we survived the windy weather with just one fence panel blown down, so I’m feeling very lucky right now compared to these poor souls who have been flooded out of their homes.

best wishes

jane

 “ A trouble shared is a trouble halved “