[georgieporgieParticipant]

Hi Doug,

Thank you for sharing your story.

My father 52 has just had 2 cycles of DT-Pace and is now ready for his stem cell transplant he is also being treat at the Marsden Sutton by Dr Boyd and Dr Kaiser. How long after your stem cell did you then have to start VDT?

Many Thanks.

 

[georgieporgieParticipant]

Hi Brenda,

My Father has been on a few courses of Velcade but had no real side effects from it. After the Velcade was given he would get a small like welting mark on his skin no pain from it the doctors gave him some cream which cleared it up. He has started to have some pain in his legs but we think that could be nerve pain from Thlamidomide (but not ruling out Velcade). Obviously everyone is different but Velcade wasn’t too bad for my Father.

I hope this helps and wish you the best.

x

 

 

 

 

[georgieporgieParticipant]

Hi Jan,

Thank you so much for your reply and advice I really appreciate it.

We are indeed going to speak with the consultant however he hasn’t had a great path so far so we are getting a second opinion as he doesn’t seem to be responding to treatment. bless him.

I wish you all the best and hope this works well for you.

P.s Dad also suffered with fatigue after his 2nd cycle.

x

[georgieporgieParticipant]

Hi,

I complete relate to your story!

My father was taken to hospital with a shadow on his lung we were told the high chance was he had lung cancer 1 month later we were told it was myeloma he has no other symptoms apart from the a broken rib which is his only lesion with a pin prick on his hip.

I was so confused how they came to this diagnosis, we two felt rushed around and no one seemed to want to help so we went and got a second opinion this guy thought it could be plasmacytoma which makes it more complicated.

We are now told that the above is just a different type of myeloma and he is currently undergoing treatment which is due to change next week as it is not working. I think this is because the second guy was correct.

Myeloma and the diagnosis is so confusing and must be hard for them to make sure the get it exactly right.

If your uncomfortable you can ask for a second opinion most consultants encourage this anyway.

Alternatively we got in contact with our macmillian nurse and she was fantastic they make you feel a lot better and clearer about things.

I know how your feeling I felt the same but I have a much clearer mind now after picking up the phone and going to another consultant.

 

 

[georgieporgieParticipant]

Hi Rebecca,

Thank you so much for your reply.

I will let him know regarding the running.

Regarding the SCT and the mixed opinions it is very tough however I agree as he is young he should go ahead but I think it’s the worry which is why I asked the question.

He has already started his Zometa and due to has his 3rd one this week, however I think they are going to change his treatment as his PP’s are still not changing.

Thanks again.

[georgieporgieParticipant]

Hi,

You can read up on CTD via this website i’m not really sure I would explain it correctly.

It sounds as though we have a similar story my father also is very fit and we don’t have cancer in our family.

The only thing we think could be linked is that he has had shingles twice about 2 years.

I really do hope there will be a cure sooner.

Regarding the turmeric we grate it on well nearly everything. We use it in marinades on roast chickens in stir frys. You’ll be surprised it goes with a lot.

thank you for the tip on the ginger were 4 days in no symptoms at the moment finggers crossed it stays like that.

i make my father drink around 4 litres of water today i have read that water is so important in all this.

can i ask how old your brother is and when did he get diagnoised?

i hope when you see the specialist you get a plan that will put him on the path to remission.

Take care

Georgie

x

 

[georgieporgieParticipant]

Hi,

I have heard of it but I don’t know of anyone that has tested it yet.

My father is due to start treatment of CTD tomorrow, but when he was diagnosed a few weeks ago we have changed his diet. Specialists will say there is no specific diet but we say it’s worth a try. I researched different cancer related diets and came across a spice called turmeric which is stated to target and kill the MM cells. Obviously I am not a specialist and I am not sure if it is working or not but his plasma cells are low and so are his PP levels.

I hope this helps, regarding the nausea I will keep you posted on things we try out if my Father gets it.

 

Take care x

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