Dearest San,
I am so sorry to read this sad news. Phil and I are thinking of you and your family.
Megan
Hi Tom,
Nothing seems to help Phil’s neuropathy but it is mostly just annoying, not painful too often luckily. Hopefully you can avoid it but if it does start get them to prescribe you something to help as soon as possible, I think if it can be controlled/stopped early on it is more likely to go away. If you need/want any info in the future about neuropathy just let me know, Phil and I have researched it in depth :-). One thing that won’t hurt and might help avoid neuropathy is taking vitamin B complex, clear it with your doctor but some people think it can prevent it.
Megan
Hi Carol,
When my husband Phil had his Melphalan he chewed on ice chips before and during the chemo. We got the ice from the ice machine in the ward kitchen. Phil also used the mouth wash provided during his stay in hospital and when he got home. He had no mouth ulcers.
Good luck and keep us posted.
Megan
Hi Tom,
Good luck with the new treatment :-). Velcade worked well for Phil but he has ended up with peripheral neuropathy in his feet so do keep your consultant informed about any pins and needles or tingling in your fingers or toes. Other than that Phil had very few side effects and his Velcade was given more often so you may find neuropathy is not a problem at all.
Megan
Hi Sarah,
Phil was never told he had to avoid any foods while on treatment but we did (and still do) make sure everything was thoroughly washed and/or well cooked.
I have a bottle of hand gel in each of the main rooms of our house but we never asked visitors to use it specifically, only if people stayed with us would I ask that they used it in addition to frequent hand washing. All of our friends and family were told though about the need to stay away if they felt unwell or had a cold. I also have anti bacterial wipes that I use on light switches, door handles, the staircase rail and any other surface I feel need to be kept clear of germs. During treatment I did this regularly.
You and M do need to be careful about germs as his immune system will be weak but you also need to enjoy yourselves. Just make sure you take sensible precautions, use hand gel yourselves if you are out and about and follow any of the advice that the hospital has given you.
I hope M is home soon.
Megan
Hi John,
Although my husband Phil had six cycles of velcade he never had any seizures so I am sorry I can not help with any of your questions. You could try ringing Ellen or Maggie on the infoline as they may know more about possible MM/velcade related causes for seizures, if there are any.
I hope it was just a blip caused by some sort of imbalance in her blood counts and that it does not happen again. I do know Phil got quite shaky once when his calcium levels went either too high or too low (I am sorry I can’t remember which way they were out of the normal range). Fingers crossed your consultant will have an answer for you.
Megan
I think you are right to ask the question, as much as we need to trust the teams it is your health that is affected by the decisions they make so you need to be happy with what is happening and understand the reasons behind it.
I hope your taste buds return soon – that would be a plus! I know Phil stop liking the taste of white baguettes while he was on treatment, he couldn’t even stand the smell so it was nice for him when that side effect went away – white baguettes are our weekend treat for sandwiches 🙂
Megan
Hi Sarah,
The work question is a tough one but I think you are right not to rush to make a decision. You and M are like Phil and I, too young to consider early retirement but you still need to get the work/life balance right. Unfortunately/fortunately Phil had volunteered for redundancy a few months before his diagnosis. We had sold our house and were going to move to Devon. A few weeks after his last day at work he finally got the MM diagnosis but we had already realised we couldn’t move so had pulled out of the sale and I hadn’t yet resigned from my job. The up side of this was that Phil did not have to worry about work during his treatment and SCT. I was already part time (I work the first two weeks of the month) so I carried on doing this. Even with having half the month off I still got too tired sometimes, especially during and the first few months after his SCT. It is hard trying to juggle everything but as with all things MM related, everyone is different – this applies to the supporters as much as the people we are supporting.
M may have had a touch of Zometa flu but as you say he is in the best place to get it sorted and to decide when to start the chemo.
Continue to learn all you can, I am still learning things now but it all helps you to know what questions to ask and what to do when things happen.
Megan
Jeff,
I am sorry I can’t answer your question but I know that while my husband Phil has been off treatment (he had his SCT a year ago) he has still had monthly blood and urine tests when he has gone in for his Zometa once a month. These tests have been checking his paraprotein and light chain numbers as well as the other more general blood counts. It may be that your paraprotein has plateaued but stabilised so they will continue to monitor your results but not give you anymore treatment until it is needed? Do you have a monthly appointment set up?
When Phil first finished his treatment we also felt like we were in limbo, after getting used to the twice weekly trips to the hospital it took a while to get used to going only once a month but we have the phone numbers of lots of people at the hospital we can call if we are worried about anything between the monthly visits and Phil has gone in once when he wasn’t feeling well and they did blood tests and prescribed antibiotics.
I would ask your consultant and/or nurse your questions and hopefully they will explain the plan of action more clearly.
Megan
Hi Sarah,
Sorry to have to welcome you and M to the forum but it is a great place for advice and support. My husband Phil was diagnosed with Myeloma at the age of 43 in May 2012. His first line of treatment included Velcade (in combination with dex and doxorubicin). A possible side effect of Velcade is peripheral neuropathy so please make sure your husband reports any tingling or strange sensations in his fingers or toes to the consultant immediately as steps can be taken to hopefully decrease the problems it may cause.
Make sure you look after yourself as well, don’t try and do too much, ask for help so you don’t get over tired. The best way for you both to be healthy and happy is to focus on the things that are important to you both, take things one day at a time. Phil hasn’t done anything specific to be healthier – while on the chemo he actually developed a sweet tooth for the first time so I kept chocolate in the house at all times 🙂 Trying to eat a well balanced nutritious diet won’t do any harm but treats are nice to.
I hope your husband’s pain is sorted out soon so he can come home.
Megan
Hi Andy,
Happy New Year to you and Steph. I hope the uncharted waters of Pomalidomide are kind to you and that side effects, if any, are minimal. Keep us posted (when the forum lets you!) and fingers crossed for a good result.
Megan
Hi Stuart,
Just to confuse the IT issues a bit more I had the same problem Andy mentioned about logging in on Friday, I was on a Mac using Firefox. I was trying to post on the Newcomers forum only to be told I wasn’t logged in but when I went to log in again I was already logged in but when I went back to the Newcomers forum I was logged out. I resolved it by hitting the refresh button in Firefox numerous times and the forum finally decided to let me post.
Very strange.
Megan
Hello Izzie,
Many people refer to the Myeloma journey as being on a roller coaster and I have found this to be true. It is my husband Phil who has Myeloma, he was diagnosed in May 2012 and after six cycles of dex-dox-velcade he had a SCT in December 2012. There have been many ups and downs along the way but one thing I found helped while he was on the treatment was to chart the paraproteins on an excel graph. It was a lovely feeling watching the numbers and the graph line drop each month as the paraproteins decreased, it was something concrete to look at and remind us why the treatment was worth it. I can only speak as a supporter but I often find myself feeling very weepy and often actually weeping 🙂 I find it helpful sometimes to cry as it is not good to keep everything bottled up. I also attended some counselling sessions and found them helpful as it was nice to talk to someone who was just there to listen.
This forum is also a great support, I hope you will continue to let us know how you are doing as we are here to listen and help if we can.
Megan
A day at a time is the best way during recovery from the transplant but then one day you will suddenly realise how much better everything is 🙂
Megan
Hello Les,
I am glad to hear your partner is recovering well from his SCT and blood and platelet transfusions are completely normal, my husband Phil had quite a few transfusions while he was in hospital for his SCT and a couple after he was sent home.
You don’t say what kind of pain your partner is experiencing? Everyone has a different journey but if it is a side effect from the transplant itself hopefully he will be feeling better in a few months. If it is bone pain from damage that the Myeloma caused this may never go away completely but will hopefully get better in time. Many people find the Zometa helps over time and for my husband Phil, although his back pain is not gone, it is much better than it was and he no longer takes any pain killers. Let your partner’s consultants know about the pain as they may be able to prescribe something to help and give you an indication of any improvement you can expect and when.
Megan
