This topic contains 9 replies, has 4 voices, and was last updated by 
janw 7 years, 11 months ago.
My husband Ian celebrated his 60th birthday with friends and family at The Roman Camp in Callander on Sunday, (although his birthday was on Monday). It was a lovely day and we requested no pressies and raised £525 for Myeloma Uk.
Ian’s last results showed his FLC had only risen by 8 and he was still within the normal ratio, so another 2 months reprieve. We had a hard time when Ian was diagnosed and we are so happy he is in remission after his SCT in May 2015.
We had many dark days and I am grateful to the nurses on the Myeloma site for all their help in difficult times.
We are now off to Copenhagen on 29th for a few days and have booked a holiday in Bermuda in June.
Maureen
Hi Maureen
To be able to celebrate Ian’s 60th birthday in style with friends and family, must be so rewarding and enjoyable, especially after his recent set of good blood test results. Long may his remission continue, particularly after his tough time during treatment. I hope you both have a wonderful time in Copenhagen, as well as your holiday in Bermuda. I’m nagging hubby that we need to take more holidays following my current treatment, however it’s hard because he is still working and restricted to the amount of time off from work. It’s also hard when his company have been so good to allow him the flexibility to take time off to accompany me to hospital appointments which will
come thick and fast during the forthcoming sct process.
Jan X
Hi Maureen,
Great to hear Ian had a lovely day and those FLC’s are still check. Copenhagen and Bermuda sounds fantastic.
Best wishes to you both,
Stanley
Hi Jan
We had a lovely time at Ian’s 60th with family and friends. Now looking forward to going to Copenhagen, just hope the weather is kind to us.
Have you got a date for your next SCT?
Hi Stanley
Good to hear from you again and hope you are doing well
Maureen x
Hi Maureen
Hope all your bags are packed and ready for your wonderful break in Copenhagen. Our youngest son is at home following his tonsillitis operation last Friday. He is coping well, but apparently the time for infections or bleeding is five to seven days after the operation. After much discussion, he has only just reluctantly accepted that he is not well enough to go to Wembley tomorrow night to watch England play. The tickets were purchased as xmas presents.
I have a date for the stem cells to be filtered from my blood on the 12th April for up to three days for six hours per day. Last time in 2010, the maximum length of time per day was four hours. Unfortunately, there was no earlier date and I have to wait to see whether this procedure is successful before a sct date can be booked, which looks to be late May. My main concern is that if my light chains rise too much before my sct date, then it’s back to chemotherapy treatment. With only three weeks off chemo over Christmas, my light chains doubled from 150 to over 300. Let’s hope my myeloma is in sleep mode for the next few months.
Enjoy your time together in Copenhagen.
Jan X
Hi Jan
Case is not packed yet but everything ready to put in it. Why do women have to do the packing? We are returning on Friday so not taking too much. I only hope the weather stays dry.
We have had a busy period over Easter. My daughter came up from London for a few days and we spent Saturday in Edinburgh as Ian was at the football with his dad. We had lunch at Jamie Oliver’s but I wasn’t impressed so I don’t think I would return. We then visited my son, daughter in law and granddaughters. It was Isla’s 7th birthday so all the family were there and my daughter in law made a lovely chocolate cake. More calories to walk off. Ian’s dad came for dinner yesterday, I made roast lamb and strawberry pavlova.
You’re son must be very annoyed that he cannot go to the game at Wembley but it is better to be safe, as we know. Can he not get the money returned or a voucher for another game?
I hope you manage to harvest enough cells for a SCT, 6 hours is a long time to sit. Take lots to keep you occupied. Ian just got enough over 4 days. Ian’s FLC rose to 500 when he got his SCT so I hope this isn’t going to be a problem for you but I know we all worry.
Maureen x
elenaclifton. Reason: no proper
elenaclifton.
Hi Maureen,
Hope your trip to Copenhagen went well. My son quickly recovered from his tonsillitis op with only a minor scare with some bleeding when the scabs started to come off. You tend to forget how quickly you recover when you are younger. He managed to sell his England football tickets within hours on the B’ham City football site and quickly used the money to book a future England game later this year.
I underwent stem cell harvesting last week and thankfully managed to collect 3.15 million cells, which is more than I collected in 2010 and thankfully sufficient for another sct, now planned for the beginning of June. Due to my previous difficulty in 2010 with extracting sufficient stem cells, this time around prior to harvest, I was given two days of plexifor, alongside four days of Gcfs injections. I certainly benefited from advances in myeloma drugs, with the plexifor obviously working to enhance the release of the stem cells from the bone marrow. But as usual with strong chemo drugs, my body reacted to the plexifor resulting in 3 to 4 days of constant nausea and vomiting, which made me feel really rough, especially when combined with the tiredness of travelling to and from hospital for three days and the hours on the harvest machine for the two days. However, it’s all worthwhile in order to try to achieve more years of remission without drugs.
It was so reassuring to read Ian’s light chain results were 500 prior to sct and are now greatly reduced, with him now being in remission. When mine increased to just over 300 following cycle six of VCD at the end of March, I was concerned about potential further increases. However my last recent test showed a reduction to 220. Let’s hope the levels remain low between now and the sct. I’ll certainly be thinking of you both in Bermuda during June when I’m in hospital for the sct. I know where I would rather be.
Regards Jan
Hi Jan
Good to know you harvested enough stem cells for your transplant. Ian had plexifor too as well as 4 days on gcfs injections. You should have a nice holiday to look forward to when you are well enough to travel. I hope your SCT goes well and gets you into remission for a long time.
We had a lovely holiday in Copenhagen despite one day of rain. There are lots of palaces to see and of course the little mermaid. We had one day of rain and we did the hop on hop of bus. The food is delicious but very expensive. We went into a lovely coffee shop and had their traditional strawberry cake with cream, (it was huge) and coffee. it cost us £28! but it was an experience.
It has been really cold here and we are glad to have some sun and warmth today, but of course it will be warmer down south.
I hope your son has fully recovered and I will be thinking of going through your SCT.
Maureen x
We are now looking forward to our trip to Bermuda in June. Ian has an appointment with the consultant on 17 May so I pray all is well.
Hi Maureen,
I’ll be thinking of Ian on the 17 May at his next consultant’s visit, because my next visit is the 16 May. You always tend to worry a little before these visits whilst you wait for your myeloma levels. Hopefully Ian’s light chain levels will remain stable for a long time yet.
In preparation for my sct, I visited my dentist for a general check up and clean. The dentist noticed the first signs of ONJ, with a small piece of bone starting to protrude through the roof of my mouth. I thought it was an ulcer following the chemo. However a ct scan has revealed bone growth beneath the gum by the side of my upper back teeth. I now wait to be referred to a specialist at the dental hospital. I remember Ian had problems with ONJ. Did he need treatment, or is it being monitored on a regular basis? I’ve been on monthly IV Zometa for four years which I presume has caused the ONJ. The advice on the American myeloma sites appears to suggest no particular surgical interventions with the bone growth, because this can cause more problems. However keeping infections from occurring in the mouth and bone appears to be the number one priority, with recommendations to use a daily mouth wash, together with a baking soda toothpaste.
I remember during my first sct, I had so many mouth sores following the strong chemo. Although the mouth sores healed quite quickly, it took my gums three years to fully recover according to my dentist. I’m not sure what the infection risks are like for patients with ONJ undergoing sct? Something else to worry about and some more appointments at the hospital.
You must be so looking forward to your holiday in Bermuda which is only a few weeks away.
Jan X
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