[dickbParticipant]

Well, after 2 aborted attempts I have started on Velcade, this is the second week and so far there have been no Liver issues, Enzymes are normal. So far I have not had any side effects but they are only doing one injection a week, this being 3.5mg. I took Dexy last week but haven't been told to take it this week The zits are back from the Dexy but I can live with those, just have to try and control the mood swings. I know Perkymite suffers a bit from constapation but so far I've been ok, no Diarrhea either, For constapation I find dried Apricots work a treat and the Germans put Linsead on their meusli in the mornings to help. Anyway, enough of that. I have been warned to expect loss of feeling in my fingertips but nothing as yet. I am just relieved that Chemo has begun again.

[meganjaneParticipant]

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

[dickbParticipant]

Hi Megan, thanks for the support and encouragement. I did start on PAD and that's what caused the Liver problem, the Dox I assume. Now with just the Velcade and Dexy everyone's hoping there is no repeat. My PP's hover between 95 and 105 normally so I have a long way to go yet.

[meganjaneParticipant]

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

[dickbParticipant]

Hi Megan,

The horrible red stuff really made me feel bad mentally as well, just watching it go in intravenously, knowing it's a poison so to speak. My doctors are thinking of another MRI because I've not had one since March and they are concerned about the bone lesions, getting slightly more pain in the right shoulder. As for the weather here, we are fortunate in that we're in a part of Germany called the Palatinate between the Rhine Valley and the French border. We had a major storm last night and there was a mini tornado about 40 miles from here yesterday but apart from that it's been the heat, we can't afford flooding in the town here because over the years the river running from the forest and the small brooks running through the town have been chanelled underground. They run under streets, the local high school, public buildings etc. Too much water and it would not only back up and flood the town but also destroy the tunnels and culverts. It has flooded here to a height of 4ft in the past, they like marking walls with flood levels and a date. It went up to 39 degrees I believe on Wednesday dropped to 25 degrees Wednesday night. I think the heat also affected the bone pain as well, you dehydrate so quickly and generally uncomfortable. I am more of a winter person, mountains and snow does more for me than a beach in the Med.

[meganjaneParticipant]

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

[dickbParticipant]

Don't want to tempt fate but had a positive meeting with my Doctor. 3rd week after beginning on Velcade and no harm to the liver so far, the Enzymes are all within parameters. Thursday is another bout plus I believe Biphosphate based bone building drug. We discussed me working again which she wasn't too impressed with. She doesn't want me to do any lifting even though the CT scan showed external lesions only, no holes in my bones. So, after a little discussion we compromised, I can do things that do not include heavy lifting. Do I feel like an invalid or what? Worse still is that to every one else I look perfectly healthy. The best thing is if it goes well next week as well, I don't have to travel to Mannheim, it can all be handled by the Onkologist in the town. That would be so good with school holidays coming up. Still a very long way to go, more ups and downs to come I'm sure.

[DaiCroParticipant]

Hi Dick,

I am also on Velcade (started Cycle 3 yesterday) and after one Cycle my Kappa Light Chains dropped from 3,087 to 380… a fantastic result for me. I completed a 6 Cycle course of Velcade 2 years ago and on a similar note my 1st Cycle wiped out a secondary tumour and my Light Chains were down to 0 after 3 Cycles, which were sustained until the 6th Cycle where treatment stopped. 🙂

Unfortunately the Light Chains started rising after only 6 weeks and relapse was called after 12 weeks. It has been the story of my MM journey… I respond well to treatment but once treatment stops I quite quirky relapse. This time around we are simply playing for time not remission. 😎

I hope your journey is similar during treatment but the opposite during remission with long bouts of treatment free healthy living.:-D

All the best. 😎

Dai.

[dickbParticipant]

Hi Dai,

Sorry to hear that remission is no longer an option. I suppose it is something that will happen to all of us eventually. With the Velcade so far things are moving in the right direction. Because of the liver problems and the length of time for it all to recover I dreaded going for the weekly blood test because it just meant having to wait. As you are all too aware, time moves on and so does MM. Those proteins are having a real party in me and the longer they are there the more damage they will do. So, to quote Tom, Onwards and upwards. All the best,

Richard

[Author]

Posts