[susantrParticipant]

Hello Dawn

I was diagnosed in February 2016 with collapse of L3/4/5 and acute kidney injury. I was admitted as an emergency and commenced on aggressive hydration to flush my kidneys. My lambda light chains were 6900. I commenced on CTD. I had vertibroplasty a week after admission. I had 4 cycles of CTD. I slept really well, think it was the Thalidomide, but did gain 14lb in weight which really upset me. I had the moon face and large belly, I didn’t look like myself. I had cyclophosphamide priming in May last year, 3 weeks after finishing CTD, which was a full day in hospital. It was 2 weeks after this chemo that I started to lose my hair. It was distressing to see huge chunks coming out on a daily basis that my daughter shaved my hair off. That too was a shock seeing myself. I recall my husbands words, which were take a look in the mirror, then suck it up and carry on, so that is what I did. I cried once only. He had bought me a lovely wig, which I wore only a handful of times. I had a sct last June. I had a rough road, hence I had a long recovery (6 months), but the day 100 BM showed I was mrd-ve. I also lost all the weight I had gained with the Dex. Now 10 months later I am back at work and feel normal again. I have been randomised to take Revlamid as maintenance, but I have not commenced this yet, I like the drug free holiday too much! My hair has grown back thick and curly and looks quite funky. So, I know it is very tough with the treatments, but very soon this will all be behind you and you can look forward to being your old self again. It’s a real slog, but you will get there. Keep positive. God bless. I hope all works well for you x

[janwParticipant]

Hi Dawn

You are bound to feel upset and down at the moment with everything so new to you and no doubt with so many questions going around in your mind. I still remember the shock, fear and disbelief when I was told I had myeloma on my 53rd birthday in 2010. It’s a very difficult and stressful time. Initially I spent months crying, feeling sad and anxious about how the cancer would change my life, as well as my hopes and my dreams for the future which was now uncertain. The wide range of emotions which we experience appear to be a normal part of the process of coping with cancer. However try to reduce the stress, which in turn can make you feel awful, and try to find some ongoing support which works for you. Myeloma UK offers “buddies” to talk to. There might also be a local support group in your area.

I totally underestimated how much the cancer diagnosis would impact my husband, family, relatives and friends. My kids struggled with their A levels because they found it difficult to concentrate. My husband had to take time off work and undertake a lot of the household chores. His career was put on hold and he had the complete financial burden for the family. Looking back, I wish I had asked for family counselling so that we could all have worked together with professional, positive support and help.

As others have said, it will start to get better, but it’s important to be patient.

Regards Jan x

[jollyjoshParticipant]

Hello Dawn,

I am replying on my wife behalf. Sue was diagnosed in Sep 2016 with non secretory myeloma. The treatment was 4 cycles of VTD with weekly injections. The visual side effects were minimal with no hair loss, just hunger pains after the injection. Sue was also given Zometa on a monthly basis again no real problems.

Sue returned home a couple of weeks ago after having having a stem cell transplant and is now recovering at home, a couple of hospital visits for high temps but nothing major.

Sue was fortunate enough to speak to a lady through this website on treatment and the SCT process which was excellent and very helpful, not sure if you know about this help.

The process is long but keep positive and strong, you will get through this.

Yours Gary

 

[dawnParticipant]

Hi Gary
Thankyou so much for your reply and I am so pleased that sue is doing so well.
I do seem to be having quite a few problems at the moment with my treatment and I just hope I start to see an improvement in my next cycle.
I seem to have this Mist like a brain fog over my eyes and I have a very red rash like a sun burn aswell as neuropathy. Everyday seems to bring a new challenge im finding but I will get ther and your encouraging news really helps to lift my spirits.
I have been keeping a diary as I’m not sure if the antinviral meds may be a interacting with the velcade or the thalidomide.
Anyway please keep me updated with sue as it is so good to keep in touch with people who know are going through this.
Best wishes
Dawn

[tmcintyreParticipant]

Hi Dawn,

My husband had the rash at the end of his first cycle so they stopped everything except Velcade. The rash went within in a week.  They reintroduced Thalidomide for the 3rd cycle and Aciclovir during the 4th.  Most of the nurses thought it was Co-Trimoxazole which was the culprit and he hasn’t gone back on that and the rash hasn’t returned. As I mentioned before w,hen he reported Neuropathy which was waking him up every night they again stopped Thalidomide and reduced the Velcade dosage. He now has Amitriptyline which has virtually eliminated the pain.

Its good that you’re keeping a diary and I’m sure your consultant will adjust your medication ro ease your discomfort

best wishes

Teresa

 

• This reply was modified 7 years ago by  tmcintyre.

[janwParticipant]

Hi Dawn

During my first cycle of Vcd, I also had a red sunburnt face which then progressed to red spots on my trunk/legs with large amounts of skin peeling off from my hands and feet. My bloods at the end of cycle one showed an infection and I was admitted into hospital for monitoring. Like Teresa’s husband, the antibiotic Co-Trimoxazole was found to be the problem causing the red face, red spots as well as raising my infection markers. Surprisingly I had taken Co-Trixoxazole/Septrin for 4 cycles when on Cdt in 2010 without any problems, but my body has now developed an allergic reaction to this drug. As soon as the Co-Trimaxozole was stopped the rash and red face quickly reduced. I also had foggy vision for a few mornings each week which was thought to be a reaction to Velcade. I’m still on antivirals some 8 months following my last Sct due to suffering with shingles after my first Sct. Luckily the antivirals don’t appear to cause me any side effects, but we do all react differently to the drugs.

It’s worth speaking to your consultant about your red rash which might be the Allopurinol or the Co-Trimoxazole. Hopefully with the help of your doctor you will be able to find out which drug is causing you these side effects. It’s really important to discuss any onset or worsening of your peripheral neuropathy (PN) with your consultant who can closely monitor and review your dosing schedule which can help keep symptoms at a low grade. Myeloma UK has a useful factsheet on PN which outlines some of the available pain relief and tips for self management.

I hope you find the second cycle much easier.

All the best. Jan

[dawnParticipant]

Thanks Jan, I will speak with them on wed. All the best to you and lovely to speak with you
Dx

[dawnParticipant]

Thanks Teresa that is really helpful and I will speak with my consultant in the morning.
Sending my very best wishes to you both
Dx

[andycParticipant]

Hi Dawn

I hope that you are doing well and don’t mind me posting on your thread.

I am due to start VTD next week, and it is encouraging to hear some of the comments on here regards the side effects.

I am by nature a very positive person, and I suppose my main concern regarding the drugs is not the physical pain but the emotional effects.

[dawnParticipant]

Hi Andy
Having a positive attitude will help you so much and you will experience up’s and downs with treatment.
I have decided to change my treatment plan to VCD purely because I have suffered with the neuropathy quite badly, however the vtd has got a better response rate some I am told and I’m sure you will be fine.
Do you mind if I ask what your paraprotein levels ?
Good luck , stay positive and please keep me updated.

[andycParticipant]

Thank you for your message Dawn.

I think my paraprotein levels are 571 but I’m not sure. I was given so much information at my last consultation that it was difficult to take it all in. I’m sorry to hear that you suffered badly with the neuropathy, that is one of the side effects that concerns me.

Will post an update on here after my first chemo session on Thursday

[dawnParticipant]

Ohh Andy that does sound a bit high!!
I thought mine was bad at 49 …. All the very best for Thursday and please keep me posted.

Dawn

[tmcintyreParticipant]

Hi Dawn,

 

Can you tell me what VCD is please.  Presume Velcade and Dex but whats the C?

Teresa

[annmarieParticipant]

Could be cyclopsomide with velcade and Dex maybe ??? Annmarie ps  not too sure if I spelt it right mind

[dawnParticipant]

Hi Teresa
Yes it is Cyclophosphamide. I start the new regime tomorrow so fingers x that I can tolerate this more than I couls the thalidomide which I feel so disappointed by as I really wanted to try the best possible option to try and bring my paraprotein levels down.

Hope all is well with you both
DX

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