[kpParticipant]

Hi Michael,

I have heard of necrosis of the jaw as a complication of Zometa. I do hope this isn’t the case for you.

I have been in cr since August 2015 following a SCT and have Zometa every month. I wondered what symptoms you experienced.

I know that Myeloma doesn’t like Zometa but having been on it for two years I wonder about whether to carry on as I read that the other complication is bones becoming too hard.

My dentist wouldn’t even do a filling for me!!!

All the best Karen

 

 

[kpParticipant]

Hi dazz, I found the effects of the chemotherapy were cumulative. It is true that everyone reacts differently so hard to predict effects for you. I guess just being diagnosed with MM was a life changer for me; I had always been fit, well and active and adjustment to a new way of being has taken time. Be kind to yourself, ask lots of questions whenever you need to and use the helpline. Have a browse through the forum posts, there is some brilliant advice on here.

What I can reassure you about is that the treatment pathway is doable. Rest if your body tells you to and take it one day at a time. I am currently in complete remission after 6 months of VTD and a Stem Cell Transplant in August 2015.

Kind regards Karen

 

 

 

[kpParticipant]

I haven’t had a holiday abroad so can’t advise re travel insurers but will ask the specialist nurse who told me she had a few who had been recommended by other patients.
I wanted to book China now I am in remission (SCT end August 15) but Consultant said not to go anywhere there wasn’t a really good health care system and ideally stay in Europe. I wonder if others have been told the same??

Kind regards

Karen

[kpParticipant]

Sorry to hear that you have joined us Bridget, but this is such a good place to come to for support and empathy. There is also a Facebook support group “UK Myeloma Support Group”.

The Myeloma UK helpline is really good, give them a ring if you feel you need to clarify anything you have been told.

Good luck with the Chemo and let us know how you get on.

Kind regards

Karen

[kpParticipant]

They didn’t talk to me about percentages, just said when I had completed 6 -8 cycles of chemo.

If you have a Nurse Specialist perhaps ask them although the previous answer is very clear.

Kind regards

Karen

[kpParticipant]

Hi, I do hope you went straight back to the hospital for advice, particularly with a spiking temp. I haven’t been on for a few days so know this reply is a bit late.

When I was 6 weeks post SCT I got a  cold sore which prompted them into action, bloods checked, acyclovir prescribed etc. So I guess act quickly on any concerns re health is imperative when your immune system so weak.

Hope your husband is feeling better now.

Kind regards

Karen

[kpParticipant]

Well, I am now 6 months  post SCT, no meds, monthly appts for Zometa and 3 monthly appts for monitoring. Feels very strange not to have two or three appts a week but good to feel well. I still have days when I feel very fatigued if I have overdone it the day before but this gets less as time goes on. I am finding it hard to lose the post SCT infection worry so still being cautious and using hand gel etc. Another monitoring appt week after next so anxiety building around the “has it come back” question.

I guess it will take some time to get used to this new way of being. I read a post which said “live in the moment” which feels like good advice.

Onwards and upwards

Karen

[kpParticipant]

I would have thought blood tests for paraprotien and free light chain levels and a urine test for Bence Jones protiens too.

Kind regards Karen

[kpParticipant]

I would like copies of my Bone Marrow Biopsy reports. Some time ago now I asked what the results were and the Doctor looked at me like “Duh” and said “you have Myeloma”. Well I knew that!!!! I was already on VTD chemo but I know the BMB tells them a lot more. Perhaps I should ask for copies of the reports. I have had two BMB’s, one when the Myeloma kicked off and a second 100 day post Stem Cell Transplant.

Cheers Karen

[kpParticipant]

I think you are supposed to get copies of letter if you want them. The hospital I attend always sends me a copy and I don’t have to ask. Mind you sometimes they arrive three months after the clinic date.

Kind regards

Karen

[kpParticipant]

I agree with above advice to avoid anyone with a known infection. Even in remission your immune system does not get back to full strength. I also find it takes me weeks to get over a simple cold. Don’t risk it.

Kind regards

Karen

 

[kpParticipant]

Hi Mike, the main problem I had after the administration of high dose Melphalan was low blood pressure. I hadn’t realised there was a risk of ongoing cardiac problems and don’t recall it being discussed. Mind you there was so much to take in at the time it is quite possible/probable it was as I have been very well looked after throughout this journey.
I feel lucky to have recovered  well from the SCT and am awaiting the results from the 100 day bone marrow with everything crossed.

Kind regards

Karen

 

• This reply was modified 8 years, 9 months ago by  kp.

[kpParticipant]

Hi Mike, so glad you are starting to feel better but sorry to read you have only achieved a partial response. I hope you will find that involvement in the trial does increase chance of keeping the MM under control.
Very best wishes

Karen

[kpParticipant]

Hi Julie,

Feeling tired and the weariness of fatigue are common problems during treatment phases for MM. Thankfully it passes although 4 months after SCT I have seriously tired days, usually after I have inadvertently over done it the day before. Listen to your body and adjust your activity accordingly is good advice.

Best wishes Karen

[kpParticipant]

Hi All, I am now 107 days post SCT. You are so right Bernard, it was an ordeal but is so worth it. The care I have received has been first class from everyone I came into contact with as an in patient and an out patient.
I was told this week “no free light chains, complete remission” so I am hopeful of a decent period MM free.

I guess the effects of the treatment are incremental as I hadn’t really acknowledged how poorly I have felt this year until a couple of weeks ago when I suddenly realised how well I feel. I have got my normal life back.

Onwards and upwards, hope everyone keeping well

Karen

[Author]

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