Velcade maintenance dose; weekly or fortnightly?

[bushsicky]

G'day.  After 9 months of weekly CyBorD, my MM is in Complete Remission. and AL is stable.  I've got about 10 weeks left on Velcade 2.5 mg,  plus Dexa 10 mg with it, and Dexa also the next day.  Doctor asked if I'd like weekly or fortnightly treatment, I opted for weekly, but am now wondering if "gentler", with recovery time, is what my body is asking for, and change it.  Question: is anything known about effectiveness of both regimes compared ?  I gather neuropathy is more of an issue at this point, being cumulative; any implications there? Or should I not care about optimisation, and just organise what feels more theraputic to me.  Probably fortnightly, I'd like to try it, but of course am keen to get treatment finished.

Thanks very much.. Cheers

[VickyB]

Hello..this is my experience, but as we respond differently , journey experience may be different even on the same regime. Weekly Velcade with Dex made me very ill , and didn't really work..Melphalan didn't work for me either..My life was totally dominated by the side effects , and I was allergic to steroids.I didn't really recover , and then along came the next dose.Instead of reducing, my light chains increased. After several months break, my health nose dived , and in desperation my new doctor suggested Velcade every two weeks...Hey ho...my body responded, and my levels are the best they've been in three years..For me, my experience has been very good, and without Dex...albeit the Velcade given into a vein and not into the skin.For me , less was more , and my body responded better on a gentler approach, rather than aggressive.I reckon you should just organize what feels therapeutic to you...or, stick with the doctors advice if it is working well..Either way, the important thing is good results , but personally I don't feel you should fear a gentler approach. Good luck, and let us know how you get on...Vicky B.

[Lesley]

Good Morning

I think, on a personal note, I would opt for the weekly. I think I would like it to be over and done with quicker. I remember asking my consultant if I could have some time off and to be honest, it was a waste of time. I didn't feel any better and should have just ploughed on through. The after effects also came as a shock as in my ignorance I thought a few weeks off I would start to feel better and it took months!

All the best whichever method you choose.

Lesley

[bushsicky]

Thanks VickyB.  At this point I sort of feel weekly keeps me too subdued, and I need time to get my fight back before next treatment.  Your "less is more" statement does resonate, and I'll try fortnightly to see how it works, and whether I stick to that.

Thanks too Lesley, and I certainly agree there's a strong incentive to get it over and done with.  I take your point that after effects will probably take months, even with a gentler last phase of treatment. 

Cheers Bushsicky

[VickyB]

Well done Bushsicky....you've made a decision, and that probably makes you feel a bit better. I'm pleased to have been some help . The two weekly regime , however , has caused a lot of controversy in my hospital dept. It doesn't follow the usual protocol, so nurses are confused , the system doesn't recognize the appointment dates , and there's a lot of confusion to get me in and out and appointment ready for the next visit. I was surprised to read your post , because I'm constantly told that two weekly is not 'normal' , so I was really pleased to hear of your doctors suggestion.I can only talk of my own experience , and it's worked brilliantly for me..I'm pretty bedridden for a few days after chemo , but it's now an absolute relief to have the next week off , and I get a return to strength and activity that I have never had on weekly..The important thing is that you get some positive results..obviously if you're not responding , you must consider weekly again...I had terrible skin reactions to subcutaneous Velcade, and now it's given through a drip ..scary , but effective for me.
I do hope you feel a lot better soon , and hope that for you too, less is more. Vicky B.

[bushsicky]

Thanks very much VickyB.  Yeh you're right, I felt an instant relief as soon as I had organised to miss tomorrow's Velcade, and at least be fortnightly for now.  The nurses want me to discuss it, and I will, and they email doctor, I'd rather discuss with doctor but will have to wait a few weeks for next appt. I just couldn't face treatment tomorrow, still not recovered from last week, usually I'm stoic, as we all are, but this time I'm being gentle, and already feel stronger for it. Like you I'm in bed 2 or 3 days each time, and the off week return to strength and activity you speak of inspires me.  Thanks for the support, and I'll let you know how it works out.   All the best on your journey too.
Cheers.  Bushsicky

[karonk08@hotmail.co.uk]

I don't know what CyBorD is you've had previous. ( why did you have this ?) great news your MM is in complete remission,& your Amyloid is stable ( just wondering why they are at the moment giving you the velcade if things are stable  and going well.
I have also MM & Amyloidosis, & had six months of velcade & Dexs ( also twice a week injections)then tablets in between. I had the injection & tablets for 2weeks,& then had a week off, as the treatment got more, my fatigue etc seemed to take its toll.
They decided to stop this treatment after 6 months ,as protein / light chain levels were platoing.
I've had my stem cells collected with possible transplant at some point( I have to have a gut bi-op to see if Amyloid there, as apparently can bleed and is a risk)
The stronger chemo I had before the stem cell collection made me nausea & out if it for a few days,& my hair is coming out in handfuls now.
My tongue is enlarged like yours, though like the others say, I had other bi-ops to detect, not a tongue one.
Good luck with your treatment😃Karon-Leeds

[patpinchin]

Hi Karon,

CyBorD is Cytoxan, ( aka Cyclophosphamide) Bortezomib (Velcade) and the steroid Dexamethasone. You say you had Velcade and Dex for 6 months so that is the same thing but without cytoxan. Praps you had that too tho' were unaware that you did? Cytoxan and Velcade are given by infusion. The tablets are the Steroid which helps the chemo drugs to work more effectively. CyBorD is a very frequently used first line treatment for AL amyloidosis. As with all existing treatment for AL amyloidosis, all the treatment combinations are first line MM treatment. The novel drugs such as Velcade plus many others are so much easier to tolerate that the previous chemotherapies such as CTD and others which continued until around 2010.  However Cyclophosphamide, aka Cytoxan is still in use now as is thalidomide in combination with other novel drugs. As Professor Hawkins said at the AL Infoday in Nov 2016, our Drs are always looking for the kindest and most effective treatments for patients. What works well for one sufferer may not work or be easily tolerated by someone else.  Everyone is different as each sufferer's pattern of disease is unique so treatment is tailored by our Drs to individual patient need. Very good to hear that it sounds as if you are in remission. Long may that continue. 

If/when Professor Sir Mark Pepys new treatment is approved and available to us, it will be the first treatment of its kind specifically to treat all types of amyloidosis. It has already shown in the phase 1 clinical study that the treatment showed "unprecedented clearance" of amyloid deposits from the liver and spleen. We sincerely hope that the imminent phase 11 study for a small cohort of cardiac patients will bring similarly very good results. So many are waiting for this treatment which promises to give  an improved quality of life to sufferers of all types of the disease. Bring it on!

I received your email via Miriam. I responded to your personal email address. I hope you received it? Would be good to know. 

[Joca]

Hello Karon, CyborD is short for cyclophosphamide/ bortezomib / dexamethasone. Bortezomib is commonly known by its commercial name Velcade, so the combined chemotherapy is similar to yours. I guess you had cyclophosphamide prior to the stem cell collection. It is given as a single dose which is much larger than that given for the Cybord. It made me nauseous and sick and eventually most of my hair fell out. Sadly I didn't produce any stem cells but my hair did grow back eventually as thick as ever. I have an enlarged tongue also but apparently only about 10% of AL folk do. I don't have MM too so it don't know about Velcade maintenance treatment. I hope all goes well for you.
John

[Miriam Vered]

Cytoxan and Velcade are given by infusion. The tablets are the Steroid which helps the chemo drugs to work more effectively.

For patients with AL amyloidosis:
Cytoxan is usually given orally, as a tablet.
Velcade is usually given as an injection under the skin (subcutaneous injection). It may sometimes be given as an infusion into a vein (intravenous).
Dexamethasone is usually given orally, as a tablet. It may sometimes be given as an infusion into a vein.
 

[patpinchin]

I had Cyclophosphamide by infusion in 2009, as part of an R-CVP protocol, because I have the IgM paraprotein. Cyclophosphamide is obviously given in tablet form now.

I have oral amyloidosis too but not macroglossia (enlarged stiff tongue) thank goodness. My other mouth symptoms are chronic and quite enough to endure for 14 years with no control for the over whelming symptoms from damaged nerves and taste buds in my upper palate. I believe approx 7-10% have oral amyloidosis. I have an outstanding Local Oral Consultant. He told me he has seen 16 patients with oral amyloidosis in the last 20 years. I was quite surprised when he told me that because oral amyloidosis is rare. He has seen patients with heavy bruising in the mouth and multiple nodules of amyloid inside the lips and cheeks plus amyloid involvement in all the salivary ducts. I have all of those. Amyloid is the salivary ducts  is frequently seen in AL wherever the disease is, so Dr Lachmann at the NAC told me many years ago. Amyloid in the salivary glands gives me a very dry mouth because I have a reduced saliva flow. Normal saliva flow protects the teeth from decay so on the instructions of my dentist I have to avoid sugar like the plague to reduce the number of fillings I have to have annually even with a sugar free diet and no drinks with added sugar such as fruit juice. I use a moisturising mouth wash during the night as my chronic symptoms wake me up, at least twice every night.

Professor Ilankovan (Oral Consultant) told me he has successfully surgically removed amyloid deposits from the tongue in some patients. He is reputed to be a highly skilled oral surgeon and is very well respected in his field.

I also have severe purpura eruptions, (peri-orbital bruising). That affects around 10% too I think. I look like a raccoon when that happens as the result of the slightest trauma to the area. Even an accidental light touch will cause deep purple/black bruises to erupt. I cannot touch my eyes to wash them and stopped wearing make-up 14 yrs ago. I have very few eyelashes left, the result of amyloid infiltration. That means I do not blink as much as normal which drys out the cornea. I have to keep my eyes moisturised with frequent applications of eye drops, even during the night when dry pricking eyes wake me up. The bruises take nearly 8 weeks to heal. It was the severe purpura which led to my prompt diagnosis in 2004.  I need surgery to remove cataracts. I'm dreading that because my opthalmist has told me that avoiding touching the peri-orbital area will be impossible. Not much fun having rare manifestations with amyloid in soft tissue. Amyloid rarely regresses from the nerves, skin, mouth, airways, muscles..... even in remission. So although in remission...just......because there is nothing to relieve residual symptoms from nerve damage which Dr Wechalekar thinks the Cyclophosphamide in 2009 worsened. I have lingered on feeling very unwell ever since. The condition was manageable before I had chemo. Since then it has not been! Daily life is an ordeal. It sounds an awful thing to say, but I often wonder if it would have been better to have organ involvement. I was diagnosed very promptly by my very well informed local Haematologist. The chemo I had brought remission so had I had organ involvement the amyloid might have regressed. With soft tissue involvement, amyloid in my case has not regresses one iota. My quality of life with this overwhelming but non life threatening version of AL is very poor.

[bushsicky]

Thanks patpinchin for providing information, and also for sharing your story.  Sorry for the amount of intrusive crap you have to deal with day-to-day, well done though.

Karon, good point you raised, why is a patient kept on maintenance Velvade for quite a while after remission has been achieved.  In my case 20 weekly doses of maintenance.  I'd assumed it's been shown to increase the length of remission.  Does someone know? Miriam?

Thanks.  bushsicky

[karonk08@hotmail.co.uk]

Hi,I did have the cyclophosomide, as you all said I probably will of.
 It will be interesting if anyone does know ? Why you have been given maintenance velcade bushicky, as when I've asked about once your told your in remission , can you have a top up to keep it in remission, I got told no, that's not how it works, as just giving you treatment ( poison) for the sake of it- is it just about cost? Though could it help keep remission.
Like yourself Pat, I have an enlarged tongue,& in my mouth,& have to be soooooo careful, as like you say just have to knock slightly- even catch myself & my lips,mouth eyes etc-mine come like the raccoon too ( I know they said this all was extremely rare, as you have pointed out, only around 10%- glad I've found you to talk too, as felt so isolated )
What is sir Mark Pepys new treatment Pat ?
I have been sooooooo upset, all of a sudden more hair came out, after the stem cell collection treatment, I didn't think it would go nearly non-existent. Least they have the cells now, though don't really know what's happening at the mo( as I said before my hospital said about having a endoscopy to see if I have amyloid/bleeding in my gut) though I am worried about this procedure as if catches going down could cause blisters & bleeding- & how painful that would be !!
While in London this week at the NAC, I told the consultant about this , she does not think I should have this,as risky,& she said that the chances are I will have it there,& it may make it bleed .
She thinks as my consultant at my home , they feel keep an eye on me for the next 6 months,& see if the bleeding/ bruising etc settles down, as too risky for the transplant.
 Fingers and everything crossed everything keeps good( it's sooooo worrying the MM & Amyloid )
I feel so lost, after loosing my husband I was just getting into a routine,& I feel lost in that horrendous bubble,& life ripped away & no routine!!
Sending big hugs to all
Karon-Leeds

[Heflin]

I have my maintenance dose weekly.

[patpinchin]

Hi Karon,

An excellent explanation about Prof Sir Mark Pepys' new treatment in development (not yet approved drugs) now known as miridesap plus dezamizumab, is right here on the NAC website.

http://www.ucl.ac.uk/news/news-articles/0715/160715-treatment-systemic-amyloidosis

Sir Mark's lecture, very highly commended elsewhere on our forum was on the subject of the history and development of miridesap plus dezamizumab. Sir Mark followed his development of the SAP scan to his more recent invention of miridesap the SAP depleter drug plus the anti-SAP antibody dezamizumab, two complementary drugs. It is hoped that when used together they will clear away amyloid deposits from tissues and organs in every type of amyloidosis. Still in clinical testing.

 If/when approved the treatment will be world first! 

If you have not yet listened to Sir Mark's mind blowingly impressive lecture I urge you to do so. Miriam has now uploaded it to the NAC website so that NAC patients and anyone else affected by amyloidosis worldwide can listen to Sir Mark explaining key moments in his passionate dedicated amyloidosis research for over 40 years and still in progress. Very informative slides accompany Sir Mark's lecture.
Here is the link you need.

               
( http://www.amyloidosis.org.uk/essentials/lecture-prof-sir-mark-pepys/)

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