[meganjaneParticipant]

Hi Christine,

That is wonderful news 🙂

I am also glad to hear Chris is back at work on a regular basis, has his neuropathy improved or has he just got better at ignoring it?

Megan

[meganjaneParticipant]

Hello,

As with everything Myeloma related everyone has a different experience. If you use the search function on this forum you will find quite a few people have documented their SCT journeys. I kept a daily journal while my husband Phil was having his SCT, you can read it using this link:

http://www.myeloma.org.uk/patient-services/discussion-board/treatment/phils-sct-journey/

Phil did not go into isolation immediately but once he had a private room he stayed there until he was allowed home. I was Phil's only visitor but this was because that is what Phil wanted. Phil was in hospital for 24 days but he did get an infection which delayed his release.

I a happy to say that almost nine months on from his SCT Phil is doing well.

Megan

[meganjaneParticipant]

Hi Mary,

Phil has had three bone marrow biopsies so far with the second one being the worst. You can get sedation at Bart's but you do need to let them know in advance and take someone with you. Phil has not done this yet but he may for the next one 🙂

Megan

[meganjaneParticipant]

Hi Mary,

My husband Phil participated in the PADIMAC trial at Bart's under Professor Cavenagh. Phil was diagnosed in May 2012 and started on PADIMAC shortly after. Phil did not manage to delay his SCT as his PP only dropped by 87% instead of the 90% required but I am happy to say he now only has a trace of something – we haven't quite worked out what yet:-) – and is considered to be in Near Complete Remission or Complete Remission depending on who you ask!

We know of two people on PADIMAC who reached Complete Remisssion before SCT and so have harvested their cells for use later but have not yet had the transplant.

If you have any specific questions or would like more info just let me know. You can also click on my picture to read more details of Phil's treatment.

Megan

[meganjaneParticipant]

Hi Mary,

Welcome to the forum, everyone on here is very friendly and helpful so ask any questions you have.

My husband Phil is treated at Bart's, his first line treatment was the PADIMAC trial (he is now in remission after a SCT in December 2012) and he was not given any anticoagulants but he had no other medical problems and he was 43 at diagnosis so it may not have been deemed necessary for him. PADIMAC was dex-dox-velcade.

Megan

[meganjaneParticipant]

Hi Vanessa,

It is hard to know what to do for the best sometimes but the main thing is you are there for Stewart and your daughter and you are all making great memories together 🙂

My husband Phil was diagnosed in May 2012 and it took us a long time to get the balance right and a few tears (from me) along the way. I now understand that Phil does not want to talk about MM much, he has stopped reading the online forums and he is just getting on with life between his monthly Zometa appointments. Phil knows I still read the forums and when I judge he is in the right frame of mind I share the good news stories with him. Phil has also realised that I need to occasionally vent some steam about my job but it does not mean he has to rush back to work. The most important thing is we have agreed that if one of needs to discuss something we will but otherwise we are just trying to get a sense of normal back.

Communication is very important and is needed, you and Stewart just need to work out the best way of doing this, it is an ongoing process and there is no right or wrong way to come to terms with a Myeloma diagnosis, I am still coming to terms with it now.

Megan

[meganjaneParticipant]

Hi Greg,

Sorry to hear your wife has had a rocky start to her treatment. It is very, very difficult but the best way to cope with all the ups and downs of MM is to take it one day at a time, easier said than done 🙂

My husband Phil was diagnosed in May 2013 at the age of 43, he was immediately put on Velcade, dox and dex. His first cycle was stopped early as they were concerned about the lytic lesions in both hips, he was admitted to hospital and three weeks later he was discharged with new rods in both legs to stabilise his femur bones. The operations delayed the second cycle and then it was either his second or third cycle (it has blurred in my memory) that was cut short as he was admitted to hospital with pneumonia, this again delayed the next cycle. The drugs to fight the Myeloma suppress the immune system so more infections are an unfortunate possible side effect.

I can understand the devastation and depression and the just wanting to get on with it but it is better to have delays during treatment to ensure your wife is strong enough to cope with the drugs. Treatment can be a long road but I can tell you that for Phil, despite some very low days, he is now 15 months post diagnosis, in Complete Remission and feeling better than he has at any time in the past 18 months.

Was your wife given any anti sickness meds? I know there are different types so she may want to check with her doctor if there is another one she could try. Have you been given any idea of when treatment can start again?

Megan

[meganjaneParticipant]

Hi Mary,

I am so glad to hear Charlie will be home soon.

When Phil came home from his SCT I cleaned the house the day before and then when he was home I had dettol wipes that I used daily on the light switches, door handles and surfaces. I cleaned the kitchen counter before and after I prepared food as well. Once Phil was home I didn't worry too much about dust but cleaned the bathrooms and kitchen daily until his neutrophils had recovered.

I still slept in the same room with Phil in case he needed something in the night. I was able to leave him on his own, I returned to work three days after he got home and he managed fine, he slept most of the day while I was out.

I can't help with the children and dog question but I am sure someone else will pop along that can answer.

I hope the move goes well, that is an added stress!

Megan

[meganjaneParticipant]

I passed these details onto Phil last week and he did the survey today 🙂

Megan

[meganjaneParticipant]

Hi Jill,

I'm afraid I can't help except to say Phil and I have wondered the same thing about paraprotein levels. Phil was diagnosed with a pp level of 32 and extensive bone damage but we have read about and met people with much higher pp levels but with no bone damage.

As with everything with Myeloma is seems that each individual is different.

Megan

[meganjaneParticipant]

That is amazing Dai, it sometimes took Phil 12 minutes just to be signed in on his Velcade days 😀

Megan

[meganjaneParticipant]

Hi Dave,

My husband Phil has a slightly different situation as he volunteered for redundancy at the start of 2012 and finished work a week before he was diagnosed so he does not have a job to go back to. Saying that he had five months of treatment before his SCT in December 2012 and he does not feel ready to go back to work yet due to continuing fatigue and neuropathy in his feet. Everyone is different but remember that the fatigue takes a long time to recover from. If Phil has a bad night he can sleep during the day if necessary and there is no stress of trying to deal with work while getting better. I agree with Dai that you should take further advice. Starting back part time would allow you to gauge how you feel and then you can increase your hours if you feel up to it.

Good luck with whatever you decide.

Megan

[meganjaneParticipant]

Hi Trish,

I am so glad to hear that, hopefully the Velcade and dex won't bring Peter down too much when he starts again. Seeing the twins will definitely give him a boost 😀

Good luck with the pp results.

Megan

[meganjaneParticipant]

Hi Trish,

Sorry, I don't have any knowledge of extended Velcade treatment as Phil only had six cycles with the last two cycles reduced due to the peripheral neuropathy but I wanted to check how Peter was feeling after the hernia op?

Megan

[meganjaneParticipant]

Hi Vicki,

I know every hospital is different (Phil has to wait 12 months post SCT to get his jabs again) but Phil is still taking Acilivor 4 times a day, my understading is this is the anti shingles drug. My friend had a suspected case of shingles and when I checked with the nurse I was told not to see her even though the risk to Phil was small. Hopefully by the time you read this you will have already talked to the nurse. It is hard to stay away from all germs, I ride the London Underground to get to work and I am always worried about what germs I might be bringing home!

Megan

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