CancerCompass message board discussion started by Bayshore on 1/11/2008 http://www.cancercompass.com/message-board/message/all,19601,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I need all of your help.  Is anyone on the Rev/Vel/Dex combination cocktail?  My sister Denys had alot of problems with the Velcade and her stupid Dr. in Tampa is going to try Vel/Dox.?  She has been off of chemo for about 6 weeks now and yesterday there was another mix up at this Community hospital where she currently is and  the chemo is delayed AGAIN until Monday, this is 6 WEEKS WITH NO CHEMO AT ALL!!!.. I really need all of your help on this Please Help.  My sister needs to be at a Cancer Center.  She is currently in two much pain to travel back to Little Rock.  Time is ticking for her  and being off chemo for this lenght of time is chipping away at her life more and more. She is on so many pain meds she isn't thinking clearly.  Can anyone shed some light on this or let me know what you personal experience has been on this new Rev/Vel/Dex combination? My sister Denys life hangs in the balance.Please,Susan Bayshore Fri, 11 Jan 2008 00:00:00 GMT  On 1/11/2008 Bayshore wrote:I need all of your help.  Is anyone on the Rev/Vel/Dex combination cocktail?  My sister Denys had alot of problems with the Velcade and her stupid Dr. in Tampa is going to try Vel/Dox.?  She has been off of chemo for about 6 weeks now and yesterday there was another mix up at this Community hospital where she currently is and  the chemo is delayed AGAIN until Monday, this is 6 WEEKS WITH NO CHEMO AT ALL!!!.. I really need all of your help on this Please Help.  My sister needs to be at a Cancer Center.  She is currently in two much pain to travel back to Little Rock.  Time is ticking for her  and being off chemo for this lenght of time is chipping away at her life more and more. She is on so many pain meds she isn't thinking clearly.  Can anyone shed some light on this or let me know what you personal experience has been on this new Rev/Vel/Dex combination? My sister Denys life hangs in the balance.Please,SusanGood Morning Susan;My cocktail is as follows:*Revlimid 25 mg X 14 days of 21 (Orally)*Dexamethasone 40 mg weekly (Orally on Wednesday)*Velcade 1.0 mg/m2 on days 1/4/8/11 of 21 (I.V.)**On day 11, I also receive an infusion of Zometa (bisphosphonate), to help my bones absorb calcium. My MM has mottled my bones so that they appear grey in color on X-rays. The Drs. tell me that if the meds can reverse the MM my bones will start to heal themselves. Hence, I also take a calcium supplement to aid in the amount of calcium "floating" around my body.Rev was originally 21 days of 28, however the Drs. modified this to correspond with the Vel so that my body rests during the same week. I have been on this since July 3, 2007. I am presently in my tenth cycle of Rev and my ninth of Vel.Background: 49 y.o.; very good physical condition; no family hx. of cancer; never used tobacco products; At Dx. M-spike was 4.9 g/dL; total IgG was 6860 mg/dL; Lambda free light chain was 44.9 mg/L; Kappa 19.4; bone marrow biopsy showed 70% cellularity, of which 80% were plasma cells; deletion of chromosome 13.Present day: M-spike 1.7; Kappa 8.73; Lambda 14.2; IgG 2721; haven't had a recent BM biopsy.Treatment Plan: I am scheduled for a Auto SCT early February. I will also have High Dose Melphalan Chemo and an experimental (the Drs. call it "trial") autologous T-cell reinfusion after melphalan Tx. with anti-cancer peptide vaccines.I have NOT experienced any adverse side effects of the drugs I am taking. I do get tired at times, usually on the days of the Velcade. Especially when coming off of the rest week. 20 minute naps and I'm back to normal. I made a New Year's Resolution to eat fish 3 times/week. My M-spike was 1.2 and IGG's 2372 on 12/17/07. They have both increased since then! NOT GOOD. I am investigating if the increase is due to diet or have I bottomed out on the meds, as this will happen eventually.I trust this will help in you and your sisters' decision on the new combination. My research has shown that many Drs. are now using this as a first line of attack and not waiting for relapse to start them. Should you need any further data do not hesitate to contact me! I do wish you and your sister well in the upcoming  weeks. Stay strong and keep informed.Take care;Kevin   K. C. Fri, 11 Jan 2008 00:00:00 GMT  On 1/11/2008 K. C. wrote: On 1/11/2008 Bayshore wrote:I need all of your help.  Is anyone on the Rev/Vel/Dex combination cocktail?  My sister Denys had alot of problems with the Velcade and her stupid Dr. in Tampa is going to try Vel/Dox.?  She has been off of chemo for about 6 weeks now and yesterday there was another mix up at this Community hospital where she currently is and  the chemo is delayed AGAIN until Monday, this is 6 WEEKS WITH NO CHEMO AT ALL!!!.. I really need all of your help on this Please Help.  My sister needs to be at a Cancer Center.  She is currently in two much pain to travel back to Little Rock.  Time is ticking for her  and being off chemo for this lenght of time is chipping away at her life more and more. She is on so many pain meds she isn't thinking clearly.  Can anyone shed some light on this or let me know what you personal experience has been on this new Rev/Vel/Dex combination? My sister Denys life hangs in the balance.Please,SusanGood Morning Susan;My cocktail is as follows:*Revlimid 25 mg X 14 days of 21 (Orally)*Dexamethasone 40 mg weekly (Orally on Wednesday)*Velcade 1.0 mg/m2 on days 1/4/8/11 of 21 (I.V.)**On day 11, I also receive an infusion of Zometa (bisphosphonate), to help my bones absorb calcium. My MM has mottled my bones so that they appear grey in color on X-rays. The Drs. tell me that if the meds can reverse the MM my bones will start to heal themselves. Hence, I also take a calcium supplement to aid in the amount of calcium "floating" around my body.Rev was originally 21 days of 28, however the Drs. modified this to correspond with the Vel so that my body rests during the same week. I have been on this since July 3, 2007. I am presently in my tenth cycle of Rev and my ninth of Vel.Background: 49 y.o.; very good physical condition; no family hx. of cancer; never used tobacco products; At Dx. M-spike was 4.9 g/dL; total IgG was 6860 mg/dL; Lambda free light chain was 44.9 mg/L; Kappa 19.4; bone marrow biopsy showed 70% cellularity, of which 80% were plasma cells; deletion of chromosome 13.Present day: M-spike 1.7; Kappa 8.73; Lambda 14.2; IgG 2721; haven't had a recent BM biopsy.Treatment Plan: I am scheduled for a Auto SCT early February. I will also have High Dose Melphalan Chemo and an experimental (the Drs. call it "trial") autologous T-cell reinfusion after melphalan Tx. with anti-cancer peptide vaccines.I have NOT experienced any adverse side effects of the drugs I am taking. I do get tired at times, usually on the days of the Velcade. Especially when coming off of the rest week. 20 minute naps and I'm back to normal. I made a New Year's Resolution to eat fish 3 times/week. My M-spike was 1.2 and IGG's 2372 on 12/17/07. They have both increased since then! NOT GOOD. I am investigating if the increase is due to diet or have I bottomed out on the meds, as this will happen eventually.I trust this will help in you and your sisters' decision on the new combination. My research has shown that many Drs. are now using this as a first line of attack and not waiting for relapse to start them. Should you need any further data do not hesitate to contact me! I do wish you and your sister well in the upcoming  weeks. Stay strong and keep informed.Take care;KevinHi Kevin,  Thanks so much for answering my post.you see when Denys was first diagnosed August of 06 she was put on Revlimid.  This chemo my sister liked. She had no side effects but unfortuantely it only brought her MM down to 90% then stopped. This was done at Moffit Cancer she lives in Tampa.Then they sent us to UMAS in LIttle Rock where my sister under went a stem cell transplant using her own stem cells.She also was put on Melphalan to kill off her immune system as part of the transplant procedure.  Well anyway it turned out that the stem cell transplant didn't work either.  Believe it or not but the transplant actually doubled her Myeloma.  Then  UMAS started her on Velcade.  We were up to our 4th cycle in Little Rock and my sister returned home to continue that was on October 31st. of 2007.  Since she has been home the oncologist in Tampa at the community hospital stopped the velcade because Denys was in relentless pain in her leg.  He thought and so did she that it was from neuraphy.  He did an mri and found a mass in her pelvis.  She also had 2 lumps in her back one was bigger then the size of an egg.  He immediately started radiation but this failed to. They found out that the Myeloma moved into both of my sisters tibia's, and groin area.  My problem is that he condensed 3 weeks of radiation into 5 days because of her aggressive form of MM.  Well it is a month and a half now and still no chemo.  My sister is getting worse and worse and now is in so much pain in her legs and feet she couldn't even travel back to Little Rock if she wanted to.  They are supposed to be starting her on Vel/Doxil on Monday.  I feel that the Velcade didn't work either because like I said the Myeloma moved into the bone in her legs, and she is also getting a few more tumors/ masses.  She told me she found a small one now in her neck, and one small one in her leg.  What if this Vel/Doxil fails.  I really need to hear from someone who has failed previous attempts like Denys, and has already taken Revilimid. I think the Velcade should have been tried before the Revilimid.  Kevin I really hope someone can  help me with some of my dilema.  I speak to Cath allot she is so far similar to my sister . she really is a wonderful person. Thanks Kevin, and Good luck to you.  I will keep you informed  and in my prayers, you keep me informed on how you are doing as well.God BlessP.S<  I also question can the Dr. give Revilimid to my sister again along with the Vel/Dex combination since she took it alone and it worked up to 90%.???t. My sister is not ready to die and is very scared.Hopefully someone who is in a similar situation can explain      Bayshore Fri, 11 Jan 2008 00:00:00 GMT  On 1/11/2008 K. C. wrote: On 1/11/2008 Bayshore wrote:I need all of your help.  Is anyone on the Rev/Vel/Dex combination cocktail?  My sister Denys had alot of problems with the Velcade and her stupid Dr. in Tampa is going to try Vel/Dox.?  She has been off of chemo for about 6 weeks now and yesterday there was another mix up at this Community hospital where she currently is and  the chemo is delayed AGAIN until Monday, this is 6 WEEKS WITH NO CHEMO AT ALL!!!.. I really need all of your help on this Please Help.  My sister needs to be at a Cancer Center.  She is currently in two much pain to travel back to Little Rock.  Time is ticking for her  and being off chemo for this lenght of time is chipping away at her life more and more. She is on so many pain meds she isn't thinking clearly.  Can anyone shed some light on this or let me know what you personal experience has been on this new Rev/Vel/Dex combination? My sister Denys life hangs in the balance.Please,SusanGood Morning Susan;My cocktail is as follows:*Revlimid 25 mg X 14 days of 21 (Orally)*Dexamethasone 40 mg weekly (Orally on Wednesday)*Velcade 1.0 mg/m2 on days 1/4/8/11 of 21 (I.V.)**On day 11, I also receive an infusion of Zometa (bisphosphonate), to help my bones absorb calcium. My MM has mottled my bones so that they appear grey in color on X-rays. The Drs. tell me that if the meds can reverse the MM my bones will start to heal themselves. Hence, I also take a calcium supplement to aid in the amount of calcium "floating" around my body.Rev was originally 21 days of 28, however the Drs. modified this to correspond with the Vel so that my body rests during the same week. I have been on this since July 3, 2007. I am presently in my tenth cycle of Rev and my ninth of Vel.Background: 49 y.o.; very good physical condition; no family hx. of cancer; never used tobacco products; At Dx. M-spike was 4.9 g/dL; total IgG was 6860 mg/dL; Lambda free light chain was 44.9 mg/L; Kappa 19.4; bone marrow biopsy showed 70% cellularity, of which 80% were plasma cells; deletion of chromosome 13.Present day: M-spike 1.7; Kappa 8.73; Lambda 14.2; IgG 2721; haven't had a recent BM biopsy.Treatment Plan: I am scheduled for a Auto SCT early February. I will also have High Dose Melphalan Chemo and an experimental (the Drs. call it "trial") autologous T-cell reinfusion after melphalan Tx. with anti-cancer peptide vaccines.I have NOT experienced any adverse side effects of the drugs I am taking. I do get tired at times, usually on the days of the Velcade. Especially when coming off of the rest week. 20 minute naps and I'm back to normal. I made a New Year's Resolution to eat fish 3 times/week. My M-spike was 1.2 and IGG's 2372 on 12/17/07. They have both increased since then! NOT GOOD. I am investigating if the increase is due to diet or have I bottomed out on the meds, as this will happen eventually.I trust this will help in you and your sisters' decision on the new combination. My research has shown that many Drs. are now using this as a first line of attack and not waiting for relapse to start them. Should you need any further data do not hesitate to contact me! I do wish you and your sister well in the upcoming  weeks. Stay strong and keep informed.Take care;KevinHi Kevin,  Thanks so much for answering my post.you see when Denys was first diagnosed August of 06 she was put on Revlimid.  This chemo my sister liked. She had no side effects but unfortuantely it only brought her MM down to 90% then stopped. This was done at Moffit Cancer she lives in Tampa.Then they sent us to UMAS in LIttle Rock where my sister under went a stem cell transplant using her own stem cells.She also was put on Melphalan to kill off her immune system as part of the transplant procedure.  Well anyway it turned out that the stem cell transplant didn't work either.  Believe it or not but the transplant actually doubled her Myeloma.  Then  UMAS started her on Velcade.  We were up to our 4th cycle in Little Rock and my sister returned home to continue that was on October 31st. of 2007.  Since she has been home the oncologist in Tampa at the community hospital stopped the velcade because Denys was in relentless pain in her leg.  He thought and so did she that it was from neuraphy.  He did an mri and found a mass in her pelvis.  She also had 2 lumps in her back one was bigger then the size of an egg.  He immediately started radiation but this failed to. They found out that the Myeloma moved into both of my sisters tibia's, and groin area.  My problem is that he condensed 3 weeks of radiation into 5 days because of her aggressive form of MM.  Well it is a month and a half now and still no chemo.  My sister is getting worse and worse and now is in so much pain in her legs and feet she couldn't even travel back to Little Rock if she wanted to.  They are supposed to be starting her on Vel/Doxil on Monday.  I feel that the Velcade didn't work either because like I said the Myeloma moved into the bone in her legs, and she is also getting a few more tumors/ masses.  She told me she found a small one now in her neck, and one small one in her leg.  What if this Vel/Doxil fails.  I really need to hear from someone who has failed previous attempts like Denys, and has already taken Revilimid. I think the Velcade should have been tried before the Revilimid.  Kevin I really hope someone can  help me with some of my dilema.  I speak to Cath allot she is so far similar to my sister . she really is a wonderful person. Thanks Kevin, and Good luck to you.  I will keep you informed  and in my prayers, you keep me informed on how you are doing as well.God BlessP.S<  I also question can the Dr. give Revilimid to my sister again along with the Vel/Dex combination since she took it alone and it worked up to 90%.???t. My sister is not ready to die and is very scared.Hopefully someone who is in a similar situation can explain      Bayshore Fri, 11 Jan 2008 00:00:00 GMT  On 1/11/2008 Bayshore wrote:    Well anyway it turned out that the stem cell transplant didn't work either.  Believe it or not but the transplant actually doubled her Myeloma.  Then  UMAS started her on Velcade.  We were up to our 4th cycle in Little Rock and my sister returned home to continue that was on October 31st. of 2007.  My problem is that he condensed 3 weeks of radiation into 5 days because of her aggressive form of MM.  Well it is a month and a half now and still no chemo.  My sister is getting worse and worse and now is in so much pain in her legs and feet she couldn't even travel back to Little Rock if she wanted to.  They are supposed to be starting her on Vel/Doxil on Monday.  I feel that the Velcade didn't work either because like I said the Myeloma moved into the bone in her legs, and she is also getting a few more tumors/ masses.  She told me she found a small one now in her neck, and one small one in her leg.  What if this Vel/Doxil fails.  I really need to hear from someone who has failed previous attempts like Denys, and has already taken Revilimid. I think the Velcade should have been tried before the Revilimid.  God BlessP.S<  I also question can the Dr. give Revilimid to my sister again along with the Vel/Dex combination since she took it alone and it worked up to 90%.???t. My sister is not ready to die and is very scared.    Good Evening;Believe it or not but the transplant actually doubled her Myeloma.  I don't understand how this could happen.How soon after the SCT did this occur? Did the Drs. offer any explanation as to why?  Well it is a month and a half now and still no chemo.  Any explanation from the Drs. when they plan to resume if at all?They are supposed to be starting her on Vel/Doxil on Monday. My understanding is that this combination is the next step after Vel/Dex/Rev. I believe on this site there has been comments made by patients who have been on either Vel/Doxil or Doxil alone. You will have to check past pages but I do recall reading them.I also question can the Dr. give Revilimid to my sister again along with the Vel/Dex combination since she took it alone and it worked up to 90%.???It is my understanding that that is what makes these newer drugs so popular: Their side effects can be reversed by their discontinuance. And they appear to work well together. Also, given in lower doses they can be used as maintenance therapy. But, this is a question you should be asking your Dr. And considering what you have presented here, it should be the first question on Monday morning! You are welcome to copy my numbers and present them to your Dr. so they may revise a treatment plan if possible.Again, stay strong and informed. You will be in my thoughts. Take care;Kevin K. C. Fri, 11 Jan 2008 00:00:00 GMT Good Evening Susan;Did you and your sister make your scheduled Monday meeting? If so, how did it turn out? Were any of your concerns addressed? What is the treatment plan?Take care;Kevin K. C. Wed, 16 Jan 2008 00:00:00 GMT  On 1/16/2008 K. C. wrote:Good Evening Susan;Did you and your sister make your scheduled Monday meeting? If so, how did it turn out? Were any of your concerns addressed? What is the treatment plan?Take care;KevinHi Kevin,She started the Velcade again on Monday.  Today (Thursday) she is to begin the Doxil. I ready that this "Cocktail" is only for patients who haven't ever recieved the Velcade, as you know Denys was on it by itself prior to her setback.  Denys isn't doing well at all.  She has more lumps coming out on her stomach and neck.  She has been very constipated and in so much stomach pain for a about a week now.  Today she was going to get her colon cleansed.  The hospital was just waitng for an okay from the insurance company, I hope they got it, this can be very toxic to her system and cause her an infection and she doesn't need that now..  I really don't know anything more right now.  My parents are still down with my sister in Tampa and don't seem very optimistic that Denys will win her battle against the beast of MM.  She has lost allot of weight day and night she is moaning from the extreme bone pain she has.I am hoping to fly down sometime real soon.  That is if my sister wants visitors.  I would go either in the middle of next week or towards the end.  I am still hopeful that the Doxil works for her.   The Dr. told my sister and mom that is this fails there is nothing more he can do?  This is what I was told by my mom.  Needless to say I am very depressed over the way things are going for my sister.  She hasn't had a break from the pain since her diagnosis in August of 06.I will keep you informed.Thanks for caringSusan  Bayshore Thu, 17 Jan 2008 00:00:00 GMT Hello Susan -- You and Denys have often been on my mind this past week -- I haven't written because I thought you might have already gone to see her.  In your message to Kevin you say that Denys is moaning in constant pain.  This really worries me -- is she refusing pain medication or have they not offered it to her?  Surely they can give her something to ease her pain -- has she gone into hospice yet?  They should/would certainly be able to help with constipation and pain. Even if she can't eat right now, try to encourage her to drink -- anything!  Try different teas, fruit or vegetable juices, smoothies, water -- try to get her to take fluids -- not only will it help her kidneys, but fluid does wonders with constipation as well.  There were times when I threw up twice what I took in, but I just kept trying and very gradually I was able to keep more down than I brought up.   My thoughts and prayers are with you all during this very trying time.  Best wishes, Cath poppy/cath Sat, 19 Jan 2008 00:00:00 GMT  On 1/11/2008 K. C. wrote: I made a New Year's Resolution to eat fish 3 times/week. My M-spike was 1.2 and IGG's 2372 on 12/17/07. They have both increased since then! NOT GOOD. I am investigating if the increase is due to diet or have I bottomed out on the meds, as this will happen eventually.Take care;Kevin  Good Evening Everyone;Just to update anyone interested in what I have found out: My Spike went to 1.7 and IGG's to 2721 on 1/7/08 after eating fish 3 X week. On 1/14 both were tested again. Spike dropped to 1.2 and IGG's to 2401. I haven't plateaued out on the meds, yet!Don't let any Dr. tell you that diet isn't important. I had a substantial increase in my numbers after only one week of eating fish. And likewise, a nice drop by avoiding it.Find you balance and maintain it. Don't do anything rash. Gradual is the way to go. Above all, you are your body's best doctor. Listen to it!Take care;Kevin  K. C. Mon, 21 Jan 2008 00:00:00 GMT I'm confused Kevin -- did you improve by eating the fish or not?  It seems that your figures decreased by eating the fish, which should be good.  If you ate more fish, would they get even better??  What did you cut out to eat the fish?  I'm not against fish, far from it, but as we don't live near the sea having fresh fish is often difficult.  With the drop in your numbers, you must be in the prime position for your upcoming transplant!  Best wishes, Cath poppy/cath Tue, 22 Jan 2008 00:00:00 GMT Hi KathIt seems my sister has lost her battle with the Myeloma.  I am flying in to Tampa on Tuesday afternoon, with all of brothers and sisters (there are five of us, Denys makes 6) we will all stay until Friday afternoon.  From what my parents and brother in law are telling us is that Denys isnow almost in an altered state, that how quickly things have changed practically over night.  I don't know if she will come home or stay in the hospital room when the end comes.  My brother in law says that my sister at this time won't even know I am there?? Things are changing so fast with her, she was just speaking to me Monday and I overheard her on Wednesday from my phone speaking in the hospital room to my Mom.? Also Denys suffered a stroke of some kind.  One of her eyes is now droopy and when she did speak it was very hard to understand her.   She also sounded out of breath allot.Yesterday Denys told her husband that she couldn't do it anymore.  What happened was that her Dr. came in and told my sister that their was nothing more he could do for her.  Hospice was called and my sister stopped all chemo.  I asked my brother in law what my sister said when the Dr. told her that, he said she said nothing at all. She wasn't getting any better at all with the Velcade/Doxil combo.  She developed lumps and bumps on her chest and bottom from the Myeloma, and has many soars in her mouth,  and bruises all over her chest and legs.  She couldn;t walk at all anymore due to extreme weakness.  My Dad says that she looks like a 70yr old woman now and very, very thin., my sister is 55.  My brother in law said that last night (Saturday) was the worst so far .  Denys is in extreme pain in her stomach and back.  She hardly eats and I think they are going to give her a feeding tube.  This is very hard for me , and it will be harder to see my sister in this state. My other brother and sisters haven't seen Denys in over a year.  I am the only one who saw her through her battle as one of her caregivers in LIttle Rock. My brother in law said that when he and Denys discussed things with the pain management person.  They told my sister that when the time comes he will make her very comfortable.  Meaning that she will be practically coma tose before she passes. Thanks for your miracle story I wish my sister had one.....................................I will miss her with all my heart, but I do understand she had no quality of life at all since Aug. 06 and she and her body are just tired  and she asked  to go...Susan Bayshore Sun, 27 Jan 2008 00:00:00 GMT Dearest Susan ~~  It sounds as though things are pretty intollerable for Denys now and I am glad for her sake that you are going to be with her -- as I've said in other messages, having the physical support of my loved ones made a huge difference in my spirit - expecially when I had reached my lowest point.  I'm sure that Denys will appreciate having all of her siblings with her - even if she is in a state where she can't verbally express herself.  What I can't understand is why the doctors are not helping her to manage her pain and only offering support at the end.  Why does she have to be uncomforable at all?  Sorry, but I'm feeling anger at the fact that anyone must suffer with Myeloma with all the various pain medications and treatments that are currently available -- surely they can find something to help without making her comatose?This will be a difficult time for you and your family.  You will all be in my thoughts and prayers as you go to help Denys in whatever lies ahead.  She is blessed to have you all, but especially you who has helped her through so many of her difficult stages.  Take good care, no only of everyone else, but of yourself as well.  Thinking of you, Cath poppy/cath Sun, 27 Jan 2008 00:00:00 GMT