This Is A Picture Of Me And My Sister Denys

Deny is in terrible pain in her legs and feet.  She has stopped the velcade due to the nerve pain she is experiencing.  The lycria is making things worse for her.  She hasn't been on any chemo for over a month now.  She says the Velcade has caused much of the nerve damage.  I am hoping the Dr. will prescribe the Rev/Vel/Dex.  She has found a lump in her neck and a small one in her leg.  She also has the mass in her pelvis and groin that they are unable to remove and the radiation did not work.  The MM has moved into both tibias.  I am so worry and fearful of the unknown at this point.  My sister means the whole world to me.

Thank you all for your support.  We still havent recieved the path report taken from one of the lumps removed from her back yet.

 

On 1/6/2008 Bayshore wrote:

Deny is in terrible pain in her legs and feet.  She has stopped the velcade due to the nerve pain she is experiencing.  The lycria is making things worse for her.  She hasn't been on any chemo for over a month now.  She says the Velcade has caused much of the nerve damage.  I am hoping the Dr. will prescribe the Rev/Vel/Dex.  She has found a lump in her neck and a small one in her leg.  She also has the mass in her pelvis and groin that they are unable to remove and the radiation did not work.  The MM has moved into both tibias.  I am so worry and fearful of the unknown at this point.  My sister means the whole world to me.

Thank you all for your support.  We still havent recieved the path report taken from one of the lumps removed from her back yet.

I'm repeating myself from past posts, but ... taking 5-9 grams of fish oil per day seems to reduce or stop neuropathies (e.g. nerve pain) while taking Thalidomide or Velcade.

The very best to you and your family.

Craig 

 

I'm so sorry for your sister Susan!  I did so hope that she would have had the positive response to Lyrica that I had -- @#%!  Do you know why they seem to have been so reluctant to prescribing Revlimid?  I agree with Denys that the Velcade has worsened the neuropathy -- it did the same to me, but the Lyrica was fast acting and helped so much -- I couldn't continue because of cost, but I had such hope for her. This disease is SO individual which makes diagnosis and treatment so difficult for everyone!  Why do you want Denys to go on Rev/Vel/Dex if the Velcade is causing so much problem? 

I do hope that her doctors don't delay and change her meds as soon as possible so that she can get some relief.  Is she able to be on durogesic patches for pain? Did the previous radiotherapy to her leg work?  Surely they can find something to help!  My thoughts and prayers are with you both.  I know how frustrating it is to not be able to make things happen faster - I should have gone to hospital over the weekend, but couldn't face waiting in emergency for hours just to have a drip put in (because of an allergic reaction to a massive dose of antibiotics) and took the chance of self doctoring and sipping mouthfuls of water to make up for what I was losing by continual vomiting. It was a big risk, but the frustration of waiting was more than I could bear. Please hang in there, but keep being a squeaky wheel and make sure they hear your concerns.  And don't forget your own health in all of this -- you are very important to Denys.  I wish I could do something specific, but know that you are constantly in my thoughts and prayers.  Cath

I apologise Susan -- after reading your note to Alexis I realise that I had forgotten much of the treatment that Denys had undergone -- I can only put it down to chemo brain and short term memory loss.  A psychologist friend has told me that physically this has happened during my really bad patch after Velcade when I ended up in hospice for a month and lost 50kg - no nutrition for 3 months except peg feeding -- she feels that this had a direct effect on short term memory loss.  Anyhow, I see that Denys has had Revlimid and radiotherapy to no avail in the past -- I've been trying to find even newer drugs still in clinical trials.  There is one that they are trying here called LBH 589 put out by Novartis -- have you heard anything about it over there?  Like all of these drugs, because of the individuality of people the drugs are only good for certain people, but maybe there is something in the pipeline. Like you, I'm going to keep on trying until that magic pill does arrive -- and it will, and hopefully in my lifetime!!  Sorry about asking things that I should have remembered -- I sincerely apologise.  Cath

The Multiple Myeloma Research Foundation lists 318 clinical trials for MM.

You can find them listed here ...

http://www.multiplemyeloma.org/clinical_trials/4.09.php?n-st ://www.emergingmed.com/pub_Content_Rel_Disease.asp?dis_sys_id%3d161%26sub_dis_sys_id%3d265%26contenttype%3dCTRIAL~~~G!03DC74D02213!LYOMwg4%252b3NNzpuUVR3A%3d~emed-trials~~~@http://syndicator.www.emergingmed.com/MMRF/emergingmedtrials

Regards,

Craig 

Let's shorten that link up ...

http://www.multiplemyeloma.org/clinical_trials/4.09.php

Craig 

Hi Craig -- This sounds like a great site, but is it only for people in North America?  I tried to log on and it asked for my zip code and then it followed up with questions regarding lung cancer.  I've sent an email to them to find out the perameters, but the concept is great!  You are such a fund of information!  This is the obvious way of keeping one step ahead of the treatment that may be starting to fail -- I sincerely hope that I will be able to access it.  Many thanks for your help,  Cath

 

On 1/7/2008 poppy/cath wrote:

Hi Craig -- This sounds like a great site, but is it only for people in North America?  I tried to log on and it asked for my zip code and then it followed up with questions regarding lung cancer.  I've sent an email to them to find out the perameters, but the concept is great!  You are such a fund of information!  This is the obvious way of keeping one step ahead of the treatment that may be starting to fail -- I sincerely hope that I will be able to access it.  Many thanks for your help,  Cath

Click on the "view all trials" tab and it will show all clinical trials for myeloma. It probably is limited to North American trials. I run across Europeans - and I think Australian - now and then, but haven't yet found a central source of trials like this one for non North American trials. If I do I'll certainly post it.

Best.

Craig 

 

The MMRF is about 15 min from us in Norwalk CT. They are very helpful and willing to help anyone even if it is a question . The staff is very knowledgeable and friendly. If you have any questions or suggestions they are all ears. Do not hesitate to contact them !!! good luck  Ron

 

On 1/7/2008 poppy/cath wrote:

I apologise Susan -- after reading your note to Alexis I realise that I had forgotten much of the treatment that Denys had undergone -- I can only put it down to chemo brain and short term memory loss.  A psychologist friend has told me that physically this has happened during my really bad patch after Velcade when I ended up in hospice for a month and lost 50kg - no nutrition for 3 months except peg feeding -- she feels that this had a direct effect on short term memory loss.  Anyhow, I see that Denys has had Revlimid and radiotherapy to no avail in the past -- I've been trying to find even newer drugs still in clinical trials.  There is one that they are trying here called LBH 589 put out by Novartis -- have you heard anything about it over there?  Like all of these drugs, because of the individuality of people the drugs are only good for certain people, but maybe there is something in the pipeline. Like you, I'm going to keep on trying until that magic pill does arrive -- and it will, and hopefully in my lifetime!!  Sorry about asking things that I should have remembered -- I sincerely apologise.  Cath

Hi Cath,

Denys is still doing awful.  My parents are there with her in Tampa.  Denys is still not on any Chemo.  She went for blood work today and "Supposedly" she will start Vel/Doxil on Friday.  My brother-in-law says that this is the year she makes some kind of recovery, or hospice would be her next step.  My brother in law said my sister Denys knows she is now terminally ill.  The pain in her leg is so horrible.  My mom is her caregiver right now says my poor sister is in agony.  She is unable to watch her and breaks down and cries allot.  I quess my mom is coming to the realization on just how bad my sister has gotten.  Denys will not be returning to Little Rock as planned on January 26Th. She can hardly walk around or bearly sit.  As I have explained the Myeloma has gone into both tibia's but my sister says that it is only her left leg that hurts so much.  Just a few weeks ago my sister told me she would not let the Myeloma take her soul.  All of a sudden since being home in Tampa she is very ill now, and from what I understand through one of her friends who spoke to my sisters Dr. is that he is not very optimistic for Denys winning her battle.  Hospice is a scary name , didn't you tell me you were in hospice for a while ?? I explained to my brother in law that he better let me know when or if her time comes because I have so much to tell her especially that I love her with all my heart .  I will keep you posted but so far everything is still the same if not getting worse.  Hopefully, when her Dr. moves his ass and gets her back on some kind of chemo she will be better then she is right now.  She just sleeps all day from all the pain meds and hardly wants to eat. I really feel bad for my parents to , as I explained they are both 78yrs old, not spring chickens anymore.
Be well ,

Susan