Lisa,
So sorry to hear that Mick has an infection, hopefully he will be back home with you on Tuesday. I know when my husband Phil was admitted to hospital in the summer with pneumonia I was very worried but the hospital soon got his temperature under control. I hope Mick feels better soon.
Megan
Hi Grayham,
Welcome to the forum, you will find lots of very helpful people here and although things may be slightly different in Australia you will find from reading the posts here that even within the UK treatment varies from hospital to hospital.
My husband Phil was diagnosed with MM in May 2012 at the age of 43. Phil participated in a clinical trial in London called PADIMAC. This trial was looking to see if the use of Velcade as a first line treatment could allow the stem cell transplant to be delayed. If the myeloma (in Phil's case measured by the paraprotein levels) had a 90% response to the initial treatment the stem cells would be harvested but the transplant would not take place until the paraprotein levels started to rise again. Phil had six cycles of Velcade, doxorubicin (a chemo drug) and dex (a steroid) which resulted in a 84% drop in his paraprotein levels. The six cycles took five months to complete.
Everyone is different but Phil had no problem with the stem cell harvest, they managed to collect just under 8 million cells on the first day, it took between four and five hours. With the stem cell transplant, although it was not easy, Phil had relatively few side effects. The main problem was a stomach bug that appeared when Phil's immune system was at its lowest point. Phil was in hospital for 24 days but he is now home and recovering well. Phil is still very tired but this is getting better day by day.
There are quite a few people on this forum who have chosen not to have the transplant for one reason or another but for Phil the transplant was the best option. It is scary but if you take it one day at a time it is doable.
Good luck with your treatment and please ask any questions you want.
Megan
Hi Tom,
Good luck with the PAD treatment, I hope the side effects continue to be minimal. My husband Phil had no real side effects except for neuropathy in the feet, be sure to tell your consultant if the neuropathy gets any worse so they can look at adjusting the dose. Phil is recovering well from his SCT but the neuropathy is still an annoying side effect that is lingering on from his treatment. If you find that your stomach gets sore from the Velcade injections you may want to alternate having the injections there and in your upper arm, Phil did this when his stomach became bruised and tender.
Megan
Hi Phil and Tom,
Phil – thank you for asking the question and thank you Tom for your response. My husband Phil does not wear any jewellery but I have been worrying that carrying a card in his wallet may not be good enough, now that he is home from his SCT I need to research this a bit more and convince Phil that a bracelet is the way forward 🙂
Megan
Hello Rob,
My husband Phil was on the the PADIMAC trial at St. Bart's in London. He had six cycles of dex-dox-velcade that finished in October. Phil has just returned home from his Stem Cell Transplant. If you have any questions about PADIMAC please let us know. I think it depends on the hospital but Phil did not actually have a line put in during the initial treatment but he did have a PICC line for the transplant.
Phil also has vertebrae damage and he is hoping to have the balloon and cement treatment soon, I am glad to hear it has helped with your pain.
Megan
Hello Deb,
We are back at Bart's today for blood tests for Phil, the first since he was released on Wednesday after his SCT. Phil drove us here today as there is no congestion charge on a Saturday and I wouldn't let him go on the tube until we know his blood counts have all recovered. 🙂
Bart's has a hostel that family can stay in right next to the hospital. It is £30 per night but I never actually stayed as the time I needed it was Christmas when there was no public transport and that is the one time of the year the hostel was closed!!! I found the details about it on the hospital website under the Patient and Visitor information section. I am sure UCL will have something similar, you can check the website or ask your nurse specialist, they might have the details.
I hope this helps. I have found that on top of learning all about Myeloma there are also a lot of logistical things you have to deal with and it can feel overwhelming but just take it one step at a time and everything will get easier.
Megan
Hi Paul,
Yes, Phil was in room 3 on ward A – no window but on the quiet side of the ward. 🙂 There is the Internet available on the TVs in the room but Phil never used that. Phil had an iPad that he was able to tether to his smartphone to use the Wifi through the phone. Sometimes the connection wasn't great if too many people were using the Internet but at other times it worked well enough to surf the net quite quickly. I do know that some people get a dongle when they go in to access the Internet that way.
Phil has asked me to tell you as well to request the exercise bike when you go in. There is one on the ward and the physio will be able to arrange it. Phil had the bike for 12 hours but due to a few room shuffles we lost it. Phil has found he has lost a lot of muscle and he thinks if he had kept the bike he might have done a bit more exercise when he was in isolation and couldn't leave the room. The physio also provided him with some elastic bands to do exercises with and Phil found them very useful. One last tip from Phil which you may already know since you have been on 4a is to take your own soft toilet paper as Phil found the hospital supply uncomfortable when things became a bit tender. Also the nurses claimed the hair clippers could not be found so we would advise either cutting your hair before or taking some clippers in with you.
Any other questions just let us know and if we think of anything else we will pop it on here. We are back tomorrow to 4b for Phil's first blood tests since he was released.
Megan
Hello Paul,
My husband Phil was diagnosed in May 2012 at the age of 43 and went through 6 cycles of PAD and as Helen mentioned above I have just documented his stem cell transplant in the Treatment part of this forum (look for Phil's SCT Journey). Phil found the transplant less difficult than he/we had been anticipating. It was not easy and there were some days where Phil felt miserable and ill but he got through it and is now resting up and recovering at home. Everyone is different but we found if you just took it one day at a time it was doable.
I know what you mean about feeling neglected on the ward, there were a few times where Phil seemed to get forgotten in the shuffle of not enough staff and too many patients but just make sure you keep pressing the call button if you really need something and they will come. For the transplant you might be in a private room for some or all of it and the staff will only pop in when they need to check on you/give you meds as they are trying to limit your contact with infection. This can be very lonely but if you take in some books or a laptop it can help pass the time. Phil found the item he used the most was a radio, it kept him company without requiring his full attention.
Please do post any questions or concerns you have on this forum and some one will be able to help you. Phil and I have found a lot of useful information on here and everyone has been very supportive.
Megan
Hello Deborah,
It is all a bit mind blowing at the start, isn't it? So much information to take in. My husband Phil was diagnosed with MM in May at the age of 43 and he was treated on the PADIMAC trial at St Bart's in London. He had six cycles of dex-dox-velcade and last night he returned home after 24 days in hospital for his stem cell transplant. The PADIMAC trial is looking to see if the SCT (stem cell transplant) can be delayed by the use of Velcade as a first line treatment, this obviously didn't happen for Phil but his paraproteins did drop from 32 to 5. We know of two people on the trial though who did reach a complete response (CR) from the treatment and have been able to delay the SCT so it is possible.
Your concern about travel to and from the hospital is something we worried about as well. When Phil was diagnosed he had quite extensive bone damage and was finding it hard to walk due to lower back pain. Near the start of his treatment Phil had to have both femurs nailed due to the lytic lesions on both of his hips. He was on crutches for a month and during that time he was able to use the NHS patient transport but once he was off the crutches he had to make his own way to the hospital again. This was often very tiring for him as the lytic lesions on his ribs and shoulder have not been fixed yet but he managed it, Phil's journey was a twenty minute walk to the tube station, a 30 minute tube journey and then a five minute walk at the other end to the hospital. Each person is different but Phil never had a problem with the journey due to side effects of the treatment, all of Phil's problems with the journey related to the bone damage.
One side effect that Phil has from the treatment is peripheral neuropathy in his feet from the Velcade. His last two doses of Velcade were reduced due to the neuropathy but the numb and tingling/burning sensation in his feet has not gone away yet. Not everyone has this side effect but if you do notice any tingling or pin and needles type sensations please tell your consultant as they can reduce the dose so it does not get any worse and hopefully no permanent nerve damage is done.
If you have any other questions about PADIMAC just let us know and we will try to answer them if we can.
Enjoy the surprise (?!!) birthday party tonight.
Megan
Day Twenty Four (Day Twenty) Home
A very frustrating day but Phil is finally home. There was a mix up yesterday and the doctor crossed the anti sick meds off Phil's list of drugs instead of the pill he was taking for his neuropathy. When Phil asked for the anti sick meds he was told he couldn't have them and this took 24 hours to sort out. It may have been psychological but Phil started to feel sick without the pills. Phil also found out that he should have been given more platelets yesterday and these did not turn up until this afternoon by which time Phil had come out in a rash. Phil also asked daily for the last week if transport would be provided to get him home and the answer was always yes until the moment he was discharged when Phil was told he did not qualify as he was not neutropenic (under 0.5). The NHS is an amazing service but it can be very frustrating at times!!!!!!!
The good news is Phil is now sitting on the couch next to me at home and he has just had marmite on toast. 🙂
Phil and I would both like to thank all of you for your support during his stem cell transplant.
Megan
[u]Day Twenty Two (Day Eighteen)[/u] The Day Our Hopes Were Raised
Phil's neutrophils were up to 0.4 and there was a rumour he may be allowed home on day twenty three. Phil stopped taking the extra Adcal today as his calcium levels have returned to normal.
[u]Day Twenty Three (Day Nineteen)[/u] The Day the Neutrophils Hit 0.5
Phil's neutrophils reached the magic number today, 0.5!! The Prof was doing the ward rounds again and he suggested Phil come off the antibiotics and be monitored overnight to ensure his temperature did not spike again. This is a sensible plan but it is a bit of a blow as although we tried not to get our hopes up yesterday we thought today Phil may have been able to come home today. Maybe tomorrow??? Phil's Haemoglobin level has dropped again and his Platelets are back down to 19 so he may need more blood tomorrow before he is allowed home, if he is allowed home (must not get my hopes up again)!!!
Megan
Hi Peggy,
I hope you were released from hospital today and that you are now back in the comfort of your own home. Remember to take it easy and not rush into doing too much.
Megan
Hi Peter,
The one thing Phil has used the most since he has been in hospital for his transplant is a radio. Phil finds it hard to concentrate enough to read or watch something but the radio is a nice distraction in the background that you don't have to focus on too much unless you want to. It also make the room feel less lonely when you are by yourself.
Good luck with the transplant.
Megan
Hi Vicki and Colin,
My posts are no longer everyday because the last bit of the transplant seems to be just a waiting game for the numbers to go up, Phil is still having the GCSF injections every day but luckily, so far, he hasn't experienced any of the pain Colin got towards the end of his transplant. I am also finding I am more tired now I am back at work, I am trying to look after myself and I have managed to stay germ free!! I have also finally cleaned the house top to bottom so that is one less thing to worry about, I have stocked up on wipes, sprays, bleach and gels so our home is now ready for Phil's return.:-)
Megan
Hello Chris,
I will be keeping a close eye on Phil when he gets home to make sure he does not overdo it. I was just saying to Phil today that there is no point spending all this time in hospital and finally getting released only to end up having to go back because you try to do too much too quickly. Luckily (?) the weather isn't that great so it will be easier to stay curled up on the couch nice and warm inside.
Megan
