[tishwishParticipant]

Hi

Peter has had a few wobbly days, he had the 4th velcade injection a week ago today and since then he has been extremely tired and had no energy at all. He has slept a lot during the day time. He has now developed a chesty cough and got spots on his back. An emergency visit to hospital today confirmed something wrong with his chest but doctor doesnt want to give anti biotics …yet. also he suspects that Peter may have shingles, although Peter has no pain or itching with them, so that is a wait and see situation. Tonite he feels sick and has that horrid taste in his mouth, he cannot drink tea, he says it tastes foul. Lucozade is the order of the day. He is due to start cycle 2 on Friday but i suspect that if he is not then it will be delayed. Has anyone else had similar things whilst on the Velcade

Thanks Trish xx

[ozzyParticipant]

Hi Trish & Peter
I have had 8 injections of Velcade and start my 3rd course tomorrow. I had a very dicky start and have had a cold since January and am now on my 3rd course of antibiotics. I also take Dex and has your doc given Peter anti- viral tabs I have been taking these from the start.I have found that I have a temperature either the night of the Velcade or the next night. I am always tired and find I need regular naps. Watch out also for the pn in your fingertips.
Hope it improves.
Best wishes
Ozzy

[tishwishParticipant]

Hi Ozzy

Peter is due to start 2nd cycle on Friday. Doctor was reluctant to give anti biotics and anti virals today. He seemed to want to keep him off the drugs. Peter has had no sied effects during the four injections but the tiredness has kicked in big time this last week. We are back at hospital on Friday and hopefully will see one of our regular doctors and get some more info from them.
Trish xx

[PatGParticipant]

Hi Trish and Peter
I am currently on VCD for Amyloidosis and I have very similar side effects to Peter. I have one injection each week for 4 weeks as I could not take 2 each week. I have treatment on Tuesday and by Friday I have a cough which recedes by Monday, ready for the next round. I am very tired and have little energy and stamina. The Dex gives me two decentish days on Weds and Thurs and I make the most of these to get things done that I haven't been able to do the rest of the week. Taste is a problem and I drink green tea with ginger and lemon on the days it is really disgusting. I sometimes have to take the anti sickness tabs to let me eat but that is not all the time. It has given me PN in my hands and feet as well. But – and this is a big but – blood results say that it is working:-D . PP's down from 133 to 33 and kidney function improved to 47 so I am really not complaining.
I think it makes it easier to cope with when you recognise the pattern and ' go with the flow'. It's hard enough to fight the disease without trying to fight the side effects as well. Hope that Peter's rash is just that and not shingles. I have been on Aciclovar since the start of treatment to prevent that. Hope things improve for you both soon.
Keep well
Pat xx

[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

[tishwishParticipant]

Hello Pat

Well we have got through the night with nothing more than one minute Peter was freezing cold and the next minute boiling hot as if he was on fire, temp 36.7, so dont know whats going on. Sleepless from 3.30am for both of us.
The doctor yesterday was very reluctant to give any pills of any sort. We are waiting to see if 2nd cycle follows the same pattern. Peter has steroids Fri Sat and Mon Tues so Wed and Thurs are just catch up days for sleep……….Sunday usually is sleep day.
Dont think we will get any PP results on Friday so will be a wait for those.
Peter already has neuropathy from his previous thalidomide treatment, so far it does not appear to be any worse since starting the Velcade.
You take care too

Love Trish xx

[PatGParticipant]

Hi Megan,
Thanks for the heads up! Just put a call in to Ellen and you are right. No green tea from now on then. Will have to find an alternative for when I can't stomach ordinary tea. I am quite surprised that I haven't been told this and will bring it up next time I am in clinic.
Keep well everyone
Pat
xx

[meganjaneParticipant]

Hi Pat,

Glad I could help. We read about it halfway through Phil's Velcade treatment but Phil does not drink green tea so it did not apply for him but we did wonder what else we had not been told by the hospital?? With the meds you bring home you can read the leaflets in the box but anything administered by the hospital you have to rely on the info they give you. It is hard enough keeping track of what you are told without worrying about what you haven't been told!! I hope you find another nice tea, I drink lemon and ginger herbal tea sometimes and it is quite nice.

Megan

[debonthewebParticipant]

Hi Trish

I am on the PADIMAC trial and have had 10 Velcade injections. My paraproteins have gone down significantly and I am very close to complete remission. Unfortunately I have Neuropathic pain in my arms, legs and fingers so my chemo has been put on hold for now with the hope the pain will reduce and I can then go onto cycle $ with perhaps a lower dose of Velcade.

I think it is very important to keep the doctors informed of even the slightest problem as in my experience they take it very seriously and if necessary will stop or greatly reduce the Velcade.

Deborah
http://www.mymyelomajourney.wordpress.com

[tishwishParticipant]

Hello Deborah

Peter has some neuropathy from his thalidomide treatment, the doctor is keeping close eye on whether it gets worse on Velcade, so far we have had no probs.
Chicken Pox and chest infection and a virus is now the order of the day so Peter is feeling very poorly.

Love Trish xx

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