[bandityogaParticipant]

Hi Vicki

I hope Colin’s infection levels will fall soon but good that his temperature is normal. It must be very worrying for you and I hope you have support. The hospital didn’t find out the cause of Ian’s infection either.. Melphalan is a very strong chemotherapy and it will take time for Colin’s bloods to get back to normal. Ask the consultant about the next treatment and let him know your fears or phone the myeloma nurses.

Ian is doing well except that his neutrophils were only .09 and white blood count was low. He is being monitored weekly until they improve. Last week the clinic was running an hour and a half late. We go tomorrow so hopefully we won’t have to wait so long as we have been given a later time.

I will pray for you both and hope Colin improves and gets home soon.

Maureen x

[bandityogaParticipant]

Hi Vicki

What a worrying time for you both but I’m sure the doctors will find the right antibiotics and Colin will recover and be home soon.

Ian’s temperature spikes were 39.7 and neutrophils were below 1, so I know how worried you are.

Have you asked the consultant why Colin was not considered for 2nd SCT as he had no treatment whilst he was in remission so can’t understand how his bone marrow was in a bad way. I try to learn all I can and ask questions.

Look after yourself, and hope Colin is home soon. Did you get to the wedding?

Maureen x

[bandityogaParticipant]

Hi Stanley

Thanks for the information. They do not know the source of the infection yet but crp now 46. Consultant wants to start Ian on oral antibiotics on Sunday so he won’t get out till Monday, all being well.

Great that you enjoyed Rome, that’s where Ian proposed in 2007. You sound really fit now and hope you have a long remission .

Maureen

[bandityogaParticipant]

Hi Vicki

Ian is still in hospital but responding well to second lot of antibiotics so should be home by the weekend. He is worried about his neutrophils as they are coming down, now 1.2 from 4.2 but his crp has come down. They haven’t found the source of infection yet but he had an MRI scan on his back today. I don’t think it is in his back, no one has thought to look at his gum where he had the teeth extracted. I raised this with the McMillan nurse so she will pass it on.

Have a lovely time at the wedding and try and forget about mm.

Where do you work? I gave up working when Ian came out of hospital in October 2013. I was a company secretary for a small engineering company. I worked there for 17 years and the last year I only worked part time. I don’t miss working and have lots to fill my time.

Hope Colin feels better soon and gets into remission . I don’t know about specialists in myeloma in England, our specialists are in Edinburg, Glasgow and Dundee.

Maureen x

[bandityogaParticipant]

Hi Vicki

Ian is feeling better this morning. I phoned The Beatson in Glasgow on Monday,where he had his transplant and passed on my concerns about Ian. FVRH had put him on oral antibiotics and he had rigors all night as he had taken his quota of paracetamol. Yesterday he was changed to a stronger iv antibiotics which are now working. I think the doctor at The Beatson has got in touch and advised FVRH to change treatment. I do not have a lot of faith in our consultant and every time we go to the clinic I request we do not see him but unfortunately when Ian is in hospital we do not have a choice.

It seems to be very harsh treatment Colin is on, can you not get a second opinion on another SCT? I hope he is well enough to go to that wedding. It’s important for you to get out too.

The new treatment in the news seems very promising, the immune system destroying the cancer cells instead of chemotherapy, but it isn’t available for 5 years. Just got to pray hubby’s will be around to have this.

I try to enjoy what we have and try not to worry about the future until something bad happens.

Keep in touch.

Maureen x

[bandityogaParticipant]

Hi Vicki

Ian is still in hospital as he is still experiencing rigors and high temperatures but now on oral antibiotics and paracetamol. It is quite worrying. I only IraniAn will have a good remission.

I read your post that Colin is on melphalan and dex. Is he having to stay in hospital for this treatment? Ian would not have been referred for a SCT if we had not seen another consultant so maybe it is worth getting a second opinion.

I have been very tired driving to hospitals but otherwise fine. We have come a long way since diagnosis and I think you get stronger and more positive.

I hope Colin gets into remission with the treatment.

Maureen x

[bandityogaParticipant]

Ian had a high temperature (39.7) yesterday so he is back in hospital. He is responding to iv antibiotics and should be home either tomorrow or Tuesday. It could have been a urine infection but doctor not sure yet, his temperature is back to normal.

How are you Richard, did you pass your exam?

Maureen

[bandityogaParticipant]

Ian is now nutropenic so hopefully he will not get any infections. He is a little tired and nauseous but otherwise doing well. He has lost 2 kilos but ate like a horse before he went into hospital so he needed to loose some weight. He has wi fi , kindle and ipod but still bored.
Hopefully he will get out around day all being well.

Maureen

[bandityogaParticipant]

Hi Vicki

What a worrying time for you both. Ian had revlimid and dex for 5 cycles before it stopped working. I think if cyclophosphamide had been added it might have worked but the consultant didn’t agree.

Ian is waiting on a SCT which has been delayed as he had to have 2 teeth extracted and now waiting for gum to heal. He had a strong dose of cyclophosphamide before stem cell harvest over 6 weeks ago and his FLC have come down from 660 to 300.

Has the consultant not suggested pomalidomide? Andy is on cycle 18 of pomalidomide and hasn’t too much side effects. Get a second opinion if needed or phone myeloma nurse.

Hope all goes well, I’ll put up a prayer for you both. Look after yourself Vicki and take one day at a time.

Maureen x

[bandityogaParticipant]

Hi Richard

Hope your mock exam went well.

We had a visit to the consultant today and Ian’s FLC came down to 300 from 580 without treatment. SCT should be around 2 weeks depending on his gum.

Maureen

• This reply was modified 9 years, 6 months ago by  bandityoga.

[bandityogaParticipant]

Richard

Sorry didn’t read your post saying you are on revlimid. Ian didn’t have too many side effects.

Maureen

[bandityogaParticipant]

Hi Richard

Just heard your news and I am sorry to hear you are back on treatment. Are you going back on velcade or revlimid?

Ian hasn’t had his SCT yet as his gum hasn’t healed yet from his teeth extractions. Dentist wants him to wait another 2 to 4 weeks but I’m concerned his FLC will be rising as he is not on any treatment. We see the consultant on Monday so hopefully he will explain what is happening.

I have sympathy for your wife when you are on dex as Ian was very grumpy and impatient. Hope the treatment will be successful.

Maureen

[bandityogaParticipant]

Hi Tony

I remember the anxiety, tears and sleepless nights then my husband was diagnosed with Free Light Chain Myeloma but you will come to accept it. My advice is to take each day at a time and find out as much as you can about myeloma from myeloma.org.UK. I have found the nurses on this site very helpful and friendly. Get in touch with them if you have any questions.

I was also prescribed diazapan which calmed me down and allowed me to sleep.

Maureen x

[bandityogaParticipant]

Ian had a wisdom and back tooth extracted today at the hospital. He was given a course of antibiotics so hopefully there will be no complications. SCT will be another 4 to 6 weeks when thus gum has healed.

[bandityogaParticipant]

Hi Vicki

We will find out tomorrow what dental work will be done and hopefully it won’t be long until SCT. I get very anxious about the SCT but it is Ian’s best chance as there aren’t many treatments left. I pray that it works and he will get a good remission.

I hope that the treatment will work for Colin and you both feel better. Did you not get a flu jab?

Thinking of you both.

Maureen x

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