[tishwishParticipant]

Hello.

Not been on here for a while. Peter has been in hospital with a nasty infection. The speed at which it came was quite scary. He was not well on the Wednesday, feeling very tired. he went to bed at 8pm that evening and after several attempts to wake him the following day, I took his temp….39.9. Phone call to hospital and an ambulance was arranged to take him in. I said that I could get him there quicker in my car but they totally refused that to happen. They said that Peter was very ill and he was not safe travelling in a car. So a 3 hour wait for an ambulance then ensued………………Finally into hospital and onto oxygen, lines installed and massive amounts of drugs started to be given through this. Blood tests, chest x-rays, scans on his jaw all done throughout the dead of night. Following 10 days in hospital Peter was sent home with several packs of various drugs. The doctors decided that Peter would continue on his Velcade treatment. We have got his pp results from when he had to have a break of treatment due to the hernia. His readings went up from 8.5 to 9.9 whilst he had 6 weeks of missing treatment. This has been very scary for us as Peter is now almost due to start the last cycle 8 of Velcade. We really have no idea what will happen after this finishes as we know that the Myeloma is still very active.
We have a list of questions to ask

Love Trish xx

[eveParticipant]

Hi Trish

When it does happen it is scary,you start looking back and thinking why did you not recognise the symptoms,bit quiet,tired,just not himself,and with him going to bed !!!,you will recognise them next time,I was told you cannot learn it,you just have to recognise it when you see it!!

It's a blip,give him a month and he will gradually recover some strength ,the problem is steroids they mask infection,if Slim is not right,and we are going to bed,I set the alarm!! I know it sounds drastic but infections take hold when the immune system is low. I am surprised you had to wait so long for an ambulance!!!! I would have classed that as being urgent!!!

They might just decide to give him extra cycles with missing 6 weeks,when there is infection in the body the PP go up anyway it's only a guide,they might decide on a BMB so they can tell how the Myeloma is doing in the bone marrow,that will give you a true result..
They do not explain a lot,so it causes more worry,treat it as a blip. Love Eve

[tomParticipant]

Hi Trish and peter

Sorry you were not well Peter 🙁

Its hard to know when to phone Hospital up am sure, I hope you stay well for a long long time.
as for the 3 hour wait for the Ambulance isn't good, and complaining ?? am not sure if that would do any good but I know if it was any of my family I would certainly write a letter asking why it was so late in arriving when you were informed "Peter was very ill and he was not safe travelling in a car" ??

Hope Peter goes from strength to strength.

Tom Onwards and upwards xx

[tishwishParticipant]

Hello Eve and Tom

Yes the doctor told us about the steroids masking infections etc, we had no idea about that. The ambulance situation was very stressful, we were told it would be up to 2 hours wait…..well it was 3 hours and then it was a crew who came from out of our area. Eve, we are going to ask about a BMB to try and get a more definite result. We also need to ask if Peter ends this course of Velcade treatment could he go back on at a later stage. Do you know what the next treatment would be. We have been told that the Government funded treatment is ending, not sure what is meant by that though. We think it is possibly that the funds are to be cut…..
Will let you know when we know more

Trish x

[eveParticipant]

Hi Trish

Has Peter had Revilimid ,if not that is the next treatment usually ,but if he has had Velade and Revilimid ,there are trials out there, think its muck 5 if still recruiting,I think that's te one to get on,if you can, there is also pomilidomyde with low or high dose Dex trials.

The easiest way to see is go into trials on here they will tell you were plus criteria,they will not take him off Velcade lightly because he will start using his options up has he had a SCT yet!!!!

Velcade can be used again if patient responsed well,but they prefer a year break,plus there is no guarantee that it will work next time,plus if its stopped working now it might have run its course.

Try for a trial,would not worry about government spending a lot of these new drugs are being approved in Europe,I know it's up to Nice plus local NHS,but there are a lot of people fighting Myeloma,s corner,Myeloma UK for one.Love Eve

[tishwishParticipant]

Hello Eve
Thank you for your reply. Peter was diagnosed 31st May 2011 after 5 months of horrendous pain in his back etc…………!!! He was in hospital for a verboplasty when he became extremely ill with hypercalceamia and we were given the Myeloma bombshell. CDT treatment was given followed by SCT in Nov 2011. Sadly Peter relapsed only 13 months later in Feb 2013 and that was when they put him onto Velcade. I will look at the trials info but I don't think we are at a hospital that is taking part in trials. We gleaned this info from our specialist nurse. Revilimid could be his next option then.I suppose we just have to trust the specialists advice.

Love Trish xx

[eveParticipant]

Hi Trish

Well it will be Revilimid ,Nice set certain. Treatments,and the only way round it is trials.the three treatments are thalidomide ,Velcade then Revilimid ,treatment until Pp goes down then maintenance for how long it works,some people have been on it for years!! So it's not all doom and gloom.:-P

It might be worth travelling you can always ask for a second opinion !!! ,remission is usually half of the first time,but it has been known for some people to get more.
We never looked at remission,as we think it came back as soon as treatment was over,so we did not build up any hopes,we accept that it's going to be treatment all the time from now on.

The problem is with Slims body,Myeloma breaks down the immune system,Revliimid has a number of side effect,plus when you have had 3 treatments plus SCT,you are looking at infections,you have not said what he rest of the bloods read.nuets platelets,plus kidney function!! These are important markers.

If the same thing happens again,do not wait for ambulance ,you do have to be assertive,you know your husband best,what are they going to do turn you away!!!:-0

I hope this helps,you can learn a lot about Revilimid on the Myeloma Beacon Forum,because its American,lots of people on Revilimid ,. Hope this helps Love Eve

[PerkymiteParticipant]

I have just been pulled off of Velcade, because of bad side affects, and I am due to start Revlimid (something like that anyway 😀 ) second week in Sep.

Kind Regards – vasbyte

David

[Author]

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