[meganjaneParticipant]

Hi Pat,

I am sure I read somewhere that you should not drink green tea while on Velcade, I think this may be because it counter acts the effects of the drug but I am not 100% sure. You may want to check with the hospital or call the Myeloma info line to be sure or some one else on the forum may know. I was glad to read the good news about Beatrix 🙂

Hello Trish and Peter,

I hope the rash is not shingles and that the cough is not too serious, Phil had pneumonia while on Velcade – the pneumonia was probably due to the weakened immune system and not the velcade:-) but the cough lingered on for ages after he was better. I know this doesn't really help while Peter is feeling poorly but just to give you a heads up that even when Peter is feeling better the cough may stick around for a while. :-S

Megan

[meganjaneParticipant]

Hi Louise,

Phil was like your Dad, he managed to eat a little bit every day while he was in hospital but he did not enjoy it! Phil's upset stomach was quite bad for about seven days and then, although it got better, there was still an unpredictable nature of when he would need to dash to the loo for about another month but everything has settled back to normal now. Phil's appetite is also completely back to normal now three months post transplant so you can tell your Dad it will get better!

I hope Garry continues to improve now he has turned the corner, Phil's neutrophils re-appeared New Year's Day and it was a great start to the new year 🙂

Megan

[meganjaneParticipant]

Hi Sarah,

I hope your hand is healing well?

Phil and I are doing well adjusting to our new normal. Phil has stayed infection free since he has come home and the fatigue is becoming less of a problem as the days pass. Phil still has pain in his ribs, back and legs but this is not as bad as it was last year. We are waiting for a consult with a surgeon about a kyphoplasty op which we hope will help the back pain. The pregabalin dose has been increased to 150mg twice a day and although the neuropathy is still there it is different now and not worse so maybe it will go eventually?

We know Phil's paraprotein has already dropped from 5 just before the transplant down to 3, the next test will be the 100 day assessment in April so we are hoping it will have dropped more by then 🙂

I hope Henry is doing well.

Megan

[meganjaneParticipant]

Hi Louise,

I am glad to hear Garry(Dad)has turned the corner, it is a great feeling, isn't it?:-) I wouldn't worry too much about the blood transfusion delaying his return home. For Phil the important blood count for discharge from the hospital was the neutrophils, while he was in hospital he had a couple of platelet transfusions but once he came home he had to go back every four days to start with to have his levels checked and he had a few more platelet transfusions and his first and only blood transfusion on these trips to the hospital. All the counts need to be at a certain level before your Dad can go home but low levels of platelets and haemoglobin are normal, it takes a while for everything to recover.

Megan

[meganjaneParticipant]

Hi Jean,

If you are anything like I was I worried when I was at the hospital and I worried when I was at home!:-D

I'm glad you found Phil's journey post useful, it does help show that things will get better, it just takes time. I remember when I wrote some of the posts thinking that the stay in hospital would never end and that I just wouldn't be able to cope any longer but I did cope (thanks in part to this wonderful forum)and the hospital stay did end. Phil has now been home for almost two months and he is getting better day by day so it was worth it!

I hope Frank doesn't feel too sick, make sure he asks for more/different anti sickness meds if the one he is taking doesn't seem to help.

Take care of yourself Jean.

Megan

[meganjaneParticipant]

Hi Dan,

Good luck with your exam results today!

Your Dad will be entitled to some benefits so please ask the MacMillan people for advise on this. I think you are doing an amazing job coping with your Dad's illness while also going to school and taking exams. You could also call the Myeloma infoline (the number is at the top of this page) to ask any questions you might have, I have found Maggie and Ellen who take the calls to be very kind and helpful when I have questions about my husband's Myeloma.

Keep us posted on your Dad's progress and how you are doing.

Take care,
Megan

[meganjaneParticipant]

Hi Ann,

It is good news that Pete is out of isolation (is he still in a private room?) but terrible that he still can't swallow, I hope that side effect does not last too much longer. It is about you as well Ann, you and Pete are a team and I know how hard it is when you feel helpless because you can't do anything to make it better for Pete. It is okay to feel sad and lost, it is a difficult thing to get through but you and Pete will get through it together.

I hope as Pete's numbers continue to rise that his throat will get better.

Megan

[meganjaneParticipant]

Hi Jean,

I hope Frank was doing well today when you went in to visit him. I remember worrying if I did not get a call from Phil first thing in the morning or before I went to bed but most of the time it was because he was sleeping 😀 I learnt not to call too often as I kept waking him up! It is hard not to worry when you are not there but you will find that Frank will sleep a lot and this is good, it allows the body to heal.

Megan

[meganjaneParticipant]

Hi Louise,

That is the problem with the stem cell transplant, it has to get worse before it gets better! :-/ I hope your Dad continues to do as well as can be expected and that he turns the corner soon and starts to feel better. Hospital food isn't great when you are feeling well, so when you are feeling poorly it is the last thing you want. If your Dad can carry on with the custard and yoghurt that will be great and you will find his appetite will return when he is feeling better.

Megan

[meganjaneParticipant]

That is brilliant news Ozzy:-D

Megan

[meganjaneParticipant]

Hi Louise,

I hope everything went well this afternoon with minimal side effects for your Dad. 🙂

Megan

[meganjaneParticipant]

Hi Louise,

Everyone has such a different journey it is hard to say what your Dad might experience but if it helps this is a link to what side effects my husband Phil had when he had his stem cells returned:

http://www.myeloma.org.uk/patient-services/discussion-board/treatment/phils-sct-journey/re-phils-sct-journey3/re-phils-sct-journey2/re-phils-sct-journey2/

All of the side effects quickly disappeared when the nurse slowed the rate of the cells going in. 🙂

Good luck to Garry (Dad) and please keep us posted on his progress. Also ask any questions you have and someone will hopefully be able to answer them!

Megan

[meganjaneParticipant]

Hi Ann,

It isn't great when they tell you it will get worse before it gets better, is it? I remember Phil and I wondering each day if Phil had reached the bottom yet but you will find one day you will go in and Pete will have turned the corner and then it will be onwards and upwards – to borrow a catchphrase 🙂

Megan

[meganjaneParticipant]

Dear Jean,

I am so sorry to read about another delay, it is so frustrating. I hope they get everything organised well in advance for Monday and that it all goes smoothly next week.

Megan

[meganjaneParticipant]

Dear Keith,

I am so sorry to hear about the sepsis. I hope the BMB may help to find out the source of the problem with your platelets. Phil and I are both thinking of you.

Megan and Phil

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