Hi Tom,
I am so glad the process has started and hopefully you will soon have your new stem cells. Fingers crossed the nausea is not too bad. The set up there sounds wonderful, hospital close at hand but the ability to go to a nice room at the hotel.
Good luck for a straight forward stay in hospital/hotel.
Megan
Hi Eve,
Hopefully the consultant sees Slim soon so you will both know what the next steps are. Thank goodness you got him to the Doctor, I hope the roller coaster calms down a bit for you.
Megan
Hi Kim,
Sorry to have to welcome you to this forum but it is a wonderful place for information and support.
My husband Phil had six cycles of velcade and the last two cycles of velcade were reduced due to the PN in his feet. Phil originally tried Amitriptyline but that did not help so after his SCT he switched to Pregablin. This also did not help in Phil's case so he has now stopped taking it. He has started taking Vitamin B as this may help but he has not noticed any difference yet. But just because none of these workd for Phil does not mean they will not work for Dave, everyone's journey is very different even if a common path is followed. We were told that for most people the PN will fade within two months of the SCT so hopefully this will be the case for Dave.
Phil also struggles to sleep some nights due to the PN but as he is starting to feel better he is able to ignore it more during the day as he gets busier.
Megan
Hi Vicki,
If all the bloods are good that is good. 😀
Phil had his SCT after Colin (December 2012) but he has not returned to work as he had volunteered for redundancy (we were going to move to Devon) shortly before his diagnosis so he was job free during all his treatment. Despite not having to work Phil still gets over tired sometimes. Some days Phil will be up at 6am when I get up for work but other days he will sleep in until 11. It is getting better but if he does too much he needs to rest. I believe Colin went back to work quite quickly after his SCT? I am sure this takes a lot out of him. I think Tom is right, after a SCT it is important to sleep when you need to. Everyone recovers at a different pace, I think you need to keep the consultant updated about the fatigue but hopefully Colin's body is telling him when he needs sleep so he can continue to recover.
Phil and I are both in bed most nights by 9:30/10pm!
Megan
Hi Trish (and Vicki),
Vicki makes a good point about an emergency operation, now that I think about it that is probably what Phil's ops were. He was told the lesions at the top of his femurs were so large that if he stubbed his toe he might shatter his legs and they thought a preventative operation would be better than trying to fix broken bones. They would have been done even quicker but he kept getting bumped as the Royal London where he had the ops is the main hospital in London for accidents and every time the air ambulance arrived Phil's operation was cancelled. Peter's pain may mean the operation is urgent.
Hopefully you and Peter know more after your meeting today.
Megan
Hi Sarah Jane,
6.6 million stem cells is brilliant, well worth using the Plerixafor 🙂
Good luck for July 1st, remember to chew on ice or suck ice lollies before, during and after the Melphalan and then use the mouthwash they provide you with constantly while you are in hospital and when you get home. My husband Phil did both of these things and managed to avoid any mouth ulcers. Phil also found the thing he used most while in for his SCT was a radio, it kept him company but didn't demand too much brain power when he didn't feel like concentrating.
I hope the bake off goes well.
Megan
Hello Trish,
I am so sorry to read about this latest complication for Peter. I know everyone is different in their treatment and reaction to it and I do not know anything about hernia operations but when Phil had his two leg operations he was only off his treatment (Velcade-dex-dox) for about a week and a half before they operated. This was after only one and a half cycles so maybe because Peter has had more cycles he needs more time to recover from the chemo before an operation but it might be worth asking for another opinion?
Has Peter's mysterious rash (chicken pox?) stopped appearing with each cycle, did the doctors ever figure out what it was?
I hope your meeting with the haematologist is productive and that you can make plans to have the hernia dealt with as soon as possible.
Megan
Wow, that is hot. It doesn't feel like summer has started in London yet but I would not want temperatures like that. 🙂
I hope the MRI gives you positive news, you have had a tough start to your Myeloma journey and are more than due some good news.
Megan
Oh dear, well the dox was a nasty red colour so hopefully that was the culprit. Fingers crossed the Velcade on it's own will be kinder to your liver and knock the PP levels down
I hope you weren't affected by the floods in Germany? I thought of you when I saw how widespread the flooding was on the news.
Megan
😎 😀 🙂
That is wonderful news Dai, long may it continue!
Megan
Hi Dick,
I am glad to hear the velcade is up and running, hopefully your liver will cope well with it. The loss of feeling in your fingertips you have been warned about may be the peripheral neuropathy side effect. Please let your consultant know immediately if you have any tingling, burning or pins and needles type of feelings in your hands or feet as this could be neuropathy. They can adjust the dose of the velcade to help minimise the neuropathy. Not everyone gets this side effect but my husband Phil had his last two cycles of velcade reduced due to neuropathy but 8 months after he has finished the velcade he still has the neuropathy in his feet.
Good luck with the velcade, it worked well for Phil, in combination with dex and dox (PAD) it brought his PP levels down from 32 to 5 and now post auto SCT his PP levels are less than zero.
Megan
Hi Anthony,
That is great news, I am glad to hear your eyesight is improving. I hope you are soon feeling less ill from the chemo as well.
Megan
Hi Helen,
That is wonderful news. Keep us posted on the result of your letter as well, Phil and I turned up for a 10am appointment with his consultant last week and finally saw him at 1pm, the upside was we were in the building with the comfortable chairs but the downside was it was the waiting room with no tea, coffee or water available. It seems you can either have a comfy seat or a drink but not both!
Megan
Hi Fi,
Welcome to the forum. I hope your Dad is home soon from his SCT. I agree with everything Jean has said, my husband Phil had his transplant in December 2012 and we went one step further and had no visitors at all for the first month (our family do not live nearby so this was easy to do). I also cancelled a few meetings with friends as they thought they might be coming down with something and I didn't want to bring the germs home with me. It is a relatively short time you need to be really careful so even if your Dad feels a bit like a hermit at first once his blood counts recover the visitors can come. If your Dad is anything like Phil was he was too tired for visitors to start with so it is not such a hardship.
Frequent hand washing and, as Jean says, wiping down surfaces, door handles, light switches, etc is a good idea. Your Dad will go for quite frequent blood tests after he gets home so just keep an eye on the neutrophil count, once that starts to rise and get back to normal your Dad will be better able to fight off infections. Although Phil's neutrophils are now back at 3 I still have hand sanitizer all over the house and wipe down surfaces a couple of times a week.
For food you should be able to get a leaflet from the hospital about the neutropenic diet or call Ellen and Maggie on the Infoline for help. Basically all your Dad's food needs to be clean, well cooked and from reliable sources. Buy the pre packed meat instead of things from the Deli counter, avoid soft cheeses, have pasteurised juice, things like that. Phil did not take any extra supplements, we just tried to makes sure he had a healthy diet to go with the chocolate, Phil doesn't normally eat chocolate but almost from the start of treatment he craved it and this craving carried on until two months after his stem cell transplant but now it is gone, we think his body needed the calories/sugar 🙂
Good luck to your Dad.
Megan
Hello Posie,
I am a fellow Canadian now living in London – England, not Ontario :-). This forum is a very welcoming place and I have received lots of support and after a year of living with Myeloma I have even been able to offer some advice myself occasionally.
I am from Winnipeg but came on a backpacking trip to Europe in the summer of 1996, met my husband Phil during the trip and settled here. Phil was diagnosed with MM in May 2012 at the age of 43. His initial treatment was Velcade-dex-dox, he had six cycles of this with a few delays along the way, near the start of treatment it was decided the lesions at the top of his femurs were to large to ignore so he was admitted for surgery on both legs to have the femurs nailed. Phil was just getting over this and starting the treatment again when he came down with pneumonia that resulted in another short stay in hospital. We got through all this and Phil had his auto stem cell transplant in December 2012/January 2013 and is recovering well.
I do know what you mean about the roller coaster ride, I am still learning the balancing act, I don't keep anything from Phil but there are some days where he doesn't need my worries. Phil and I are both learning how to deal with our new life together.
I knit and crochet, I find sometimes it is the perfect thing to relax, sometimes I find I can't concentrate on it but it is easy to pick up and put down as needed.
I hope David's fatigue is only a passing side effect and his protein levels respond well to his new treatment.
Megan
