[dawnParticipant]

Hi everyone,
The time has now come for me to start treatment tomorrow!!!
I am petrified to be totally honest and I have spent today trying to take my mind of things.
I just hope that this will be a journey that I will look back on in time and thank god I did it…..

[nessParticipant]

>Hello Dawn
My Name is Vanessa my husband started treatment in November at the age of 44 and is just completing the VTD courses and waiting for stem cell treatment .  We felt exactly the same petrified but the health care team walk you through each step and are very supportive. If you have any particular questions I could try and answer from our experience .

• This reply was modified 7 years, 6 months ago by  ness.

[dawnParticipant]

Hi Vanessa
Thank you so much for your reply..I have read so much about the treatment and it’s side affects. Can you tell me how your husband has been and what he has experienced ?

Best wishes
Dx

[nessParticipant]

Hi Dawn .

His main problem through his treatment has been chest infections, they put him in hospital a couple of times with high temperatures but he had bad pneumonia 12 months ago so that seems to be his weak  spot . He has been mainly tired not many side effects at all , a couple of days after treatment he had what he described as a full feeling rather than sickness but the anti sickness tablets did help that . It is an emotional rollercoaster but just talk to anyone that will listen .

Wishing you well tomorrow

Vanessa x

[dawnParticipant]

Hi Vanessa
Could I just ask what your husbands paraprotein levels started at prior to treatment and what they are now.
Did he have any weight gain and any mood disturbances, and how were his hands. Did he experience any neuropathy.
Sorry to ask so many questions, I have been awake most of the night worrying about it all.

Thankyou so much
DX

[nessParticipant]

Morning Dawn .

Please don’t worry about the questions i wish I had known about these forums at the start . My husband was admitted straight from outpatient clinic , they wanted to start immediately we had been told the diagnosis a week earlier by orthopaedics in s mobile MI unit . So to be honest numbers didn’t stay with me . I know his para protein were extremely high because that’s what alarmed orthopaedics . He presented with fractures in his back . We haven’t had a final level given yet but from the last blood levels it was very low unable to read it.
Regards weight gain he had lost a lot as he had been ill for a while previous to diagnosis, so he has gained a bit but not gone overweight. He hasn’t had problems with neuropathy at all .
I am thinking about you today , I hope your experience mirrors ours because the level of care we have been given is amazing and it helps you cope . Get in touch any time .
Mood is a funny thing the emotions have been the hardest but regards to mood due to treatment is the dexamethasone gave him a really up beat chatty mood . This is more my true husband due to his back pains he can be quiet  at times . So in an odd way chemo days became our best days . We got out of the house he was chatty . It was very surreal for a while .
Best wishes
Vanessa

• This reply was modified 7 years, 6 months ago by  ness.

[tmcintyreParticipant]

Hi,

My husband was diagnosed in December and started VTD just after Christmas.  His paraprotein level was 11 and after 5 cycles it was down to a “trace”. Lightchains were 112 and went down to 0.2.  I don’t really know what these figures mean -everybody is different. He does have mood swings which is because of the Dexamethasone but they are generally just a flash in the pan. He started with neuropathy in his toes and slightly on the sides of his hands during cycle 4 so his consutant stopped the Thalidomide and reduced the Velcade dosage. He starts the procedure for SCT on Monday. He has put on a lot of weight – says the steroids make him hungry. He has been coughing throughout most of the treatment, some days worse than others and has just been given “puffers” to help.  He went back to work last month, just 2 mornings a week.  His mobility is quite poor but I think that is mostly due to his weight. His back pain has eased quite a bit. He has been having monthly bone strengthener and has experienced lots of creaks and crack noises which I hope is a good sign! He wasn’t sleeping well because of the neuropathy so he has been prescribed something to help and that seems to be working after just a few days.  I would urge you to tell your consultant everything that is bothering you health wise, as soon as they know they give you something to help.

He is quite stressed about the next stage of his treatment but as with the initial induction treatment, I guess we’ll get into the swing of it.

Keep in touch,

Teresa

[annmarieParticipant]

My husband was diagnosed on march the 1st came as a shock like most cases do he is now on his fourth round of vtd he is tired on some days but his main problem has been constipation which has made him feel really unwell and can go 3/4 days without going which is not very pleasant as you can imagine . Today we have been to hospital and we are now preparing for his harvesting of his stem cells ready for transplant hopefully in June / July but onwards and upwards it’s a tough journey with some ups and downs along the way but we will get through this and come out stronger as a couple x my husband is 52 and this was discovered very much by chance but since diagnosis until now things have moved very fast and hopefully going in the right direction all good thoughts tonyou all on this journey and wish u better health for the future

[tmcintyreParticipant]

My husband was constipated for 5 weeks and was the start of investigations.  It was a horrible time and was quite a relief to get a diagnosis so that treatment could start.  As you say Annmarie – we will get through this and come out stronger.

[dawnParticipant]

Hi there
I started my vtd last Tuesday with my 2nd injection administered yesterday and I have had extreme pain all through my back both times lasting the whole night and the following day. I can’t sleep at all awake all night probably because of the Dex even though that is taken 1st thing in the morning.
Anyone else having the same problems? I feel totally exhausted and I know it’s early days but I do hope this is not going to be a long term pattern 😔

[tmcintyreParticipant]

My husband had back pain before the treatment started, his consultant gave him liquid Morphine.  The pain has eased.  He was signed off work for the first 3 months thankfully because he does get very tired and although he is back doing two mornings a week he has a nap when he gets home. He also has hot flushes, its quite funny when we synchronise (mine are due to my age)

[janwParticipant]

Hi Dawn

I had 8 cycles of VCD last year prior to my second stem cell transplant. My light chains were 1900 when I relapsed in Oct 2015, but decreased to around 190 by the time end of cycle 8, further reducing to 44 after the transplant in September 2016. For me the hardest part of the VCD treatment was nausea, fatigue, sleepless nights with steroids and peripheral neuropathy in my feet/legs, but the majority of these are temporary side effects which greatly improve or disappear after treatment finishes. I didn’t experience any back pain from the Velcade injections, however I do have Fentanyl pain patches for the bone pain following collapsed vertebrae at diagnosis in 2010, therefore I might not have felt any additional back pain.

It’s worth keeping a diary of your experiences/symptoms/feelings, because you do tend to forget over the many months of treatment. It also helps identify any patterns of side effects during each treatment cycle.

I hope you treatment works well.

Jan

[dawnParticipant]

Hi Jan
Would you mind if ask you about your hair ..did you lose any on your VCD treatment?.
When you had your stem cell transplant we’re you offered a cold cap or is not something that would work with the high doses of chemo.
I am so upset to lose my hair and I know it’s only hair and will eventually grow back but it just makes me feel so frighten d with everything else to take on board.
I hope you don’t mind me asking
Dx

[janwParticipant]

Hi Dawn

Fortunately most myeloma medications and treatments do not cause hair loss. During my 4 cycles of CDT treatment, my hair remained as usual, but towards the end of my 8 cycles of VCD treatment my normal thick hair did gradually become slightly thinner.

Unfortunately almost the majority of myeloma patients undergoing a stem cell transplant (sct), which involves high dose intravenous chemotherapy (like Melphalan), lose their hair about two to three weeks after the Melphalan. You would need to ask your consultant about using a chemo cold cap, because cold caps only block certain drugs and it might not be recommended for blood cancers. If there is a possibility of cancer cells being present in the scalp blood vessels then a cold cap might prevent the chemotherapy from maximum effectiveness.

I completely understand why you are concerned and so upset about losing your hair, which can be such a distressing side effect of treatment. We all try to cope with it differently. For me, it was important to source the right wig prior to the sct. Trying on different styles and colours of wigs was an enjoyable and reassuring experience, also your hairdresser can personally style the wig to suit you. The NHS will provide you with details of where you can locally source a free synthetic NHS wig which are good quality and realistic. I also had my hair cut a lot shorter before I went into hospital for the sct.

But as you say, the good news is that any hair loss is only a short term phase and it does start to grow back quite quickly after the sct. There’s also a wide choice of headwear available on the internet. When your hair grows back, you might find it could be a different texture, thickness or even colour. My straight, dark blonde hair grew back totally grey and curly, which was quite a shock.

Try to take everyday as it comes and focus on your treatment. It’s easier said than done, but please try not to worry about what might happen in the future.

Jan x

[dawnParticipant]

Morning Jan

Thank you so much for your response and I will do as you have suggested and try and put things in place prior to treatment. I think we all have good days and bad but at the moment it all feels a bit rubbish.
Have a nice Sunday and please keep in touch.
Love Dx

[Author]

Posts