Newbie desperate for help-ABVD long term side affects

This is my first time here but I am not a newbie in dealing with the aftermath of cancer and excruciating pain. I am begging for ANY help, support, or advice related to complications and chronic pain. Here's the "Readers Digest" version but if you can help in any way I'll happily provide any details. I received the Adriomyacin, Bleomyacin, Vincristine, and Dicarbozine (DTIC) chemo cocktail. After 2 treatments I began experiencing terrible pain in my hips and some tail bone and buttock pain. This pain has increased so badly that I have spent the majority of the following years bedridden. I have had more surgeries than I can count, and nearly died 18 times from various complications that no one can definitively diagnose. I have critical hypokalemic crashes (low potassium which causes heart failure and all muscles to stop working) and this year began being plagued by seizures. The dozens of doctors and specialists agree on 2 things. One is they don't know what to do. Two is I should already be dead and what am experiencing now is my body giving out. The doctors have arranged hospice care and sent me home to await death because they have no idea how to help me. I AM ONLY 32 YEARS OLD! I HAVE A 7 YEAR OLD MIRACLE SON! (ABVD has a 99% sterility rate). I have fought 2 separate forms of cancer for 14 years with His grace. . I am eternally grateful to God for the time I have been given. Despite the doctors reports and the vultures circling overhead I am still in this fight!!!! Science only goes so far, then comes God! I just need your help, any kind of help you can offer. If you have some of the same symptoms or insight that might helpful. If you had some life threatening problems after receiving these drugs please share your experience with me in the hope that we may be able to help each other or someone else. If you don't have these problems I am overjoyed for you, truly I am! Perhaps you would be kind enough to say a prayer for my family and I and add us to your church prayer request list. I am more than happy to pray for you as well. I need you, my fellow warriors, to please do what you can. Perhaps the help I pray for may not come in time to save my life, but it is our children and their future that is far more important than me. I sincerely thank you for listening, and hope to hear from you soon. May you have a blessed life and a joyous holiday season. Dre

 

On 12/19/2008 LilMsDre wrote:

This is my first time here but I am not a newbie in dealing with the aftermath of cancer and excruciating pain. I am begging for ANY help, support, or advice related to complications and chronic pain. Here's the "Readers Digest" version but if you can help in any way I'll happily provide any details. I received the Adriomyacin, Bleomyacin, Vincristine, and Dicarbozine (DTIC) chemo cocktail. After 2 treatments I began experiencing terrible pain in my hips and some tail bone and buttock pain. This pain has increased so badly that I have spent the majority of the following years bedridden. I have had more surgeries than I can count, and nearly died 18 times from various complications that no one can definitively diagnose. I have critical hypokalemic crashes (low potassium which causes heart failure and all muscles to stop working) and this year began being plagued by seizures. The dozens of doctors and specialists agree on 2 things. One is they don't know what to do. Two is I should already be dead and what am experiencing now is my body giving out. The doctors have arranged hospice care and sent me home to await death because they have no idea how to help me. I AM ONLY 32 YEARS OLD! I HAVE A 7 YEAR OLD MIRACLE SON! (ABVD has a 99% sterility rate). I have fought 2 separate forms of cancer for 14 years with His grace. . I am eternally grateful to God for the time I have been given. Despite the doctors reports and the vultures circling overhead I am still in this fight!!!! Science only goes so far, then comes God! I just need your help, any kind of help you can offer. If you have some of the same symptoms or insight that might helpful. If you had some life threatening problems after receiving these drugs please share your experience with me in the hope that we may be able to help each other or someone else. If you don't have these problems I am overjoyed for you, truly I am! Perhaps you would be kind enough to say a prayer for my family and I and add us to your church prayer request list. I am more than happy to pray for you as well. I need you, my fellow warriors, to please do what you can. Perhaps the help I pray for may not come in time to save my life, but it is our children and their future that is far more important than me. I sincerely thank you for listening, and hope to hear from you soon. May you have a blessed life and a joyous holiday season. Dre

I cried when I read your post, my heart goes out to you...how I wish I could do something to help you.

I will put you on all the prayer lists I know and my husband and I will be praying with all our hearts for you. Sometimes prayer is the miracle drug that a person needs...

 

On 12/19/2008 LilMsDre wrote:

This is my first time here but I am not a newbie in dealing with the aftermath of cancer and excruciating pain. I am begging for ANY help, support, or advice related to complications and chronic pain. Here's the "Readers Digest" version but if you can help in any way I'll happily provide any details.

I received the Adriomyacin, Bleomyacin, Vincristine, and Dicarbozine (DTIC) chemo cocktail. After 2 treatments I began experiencing terrible pain in my hips and some tail bone and buttock pain. This pain has increased so badly that I have spent the majority of the following years bedridden. I have had more surgeries than I can count, and nearly died 18 times from various complications that no one can definitively diagnose. I have critical hypokalemic crashes (low potassium which causes heart failure and all muscles to stop working) and this year began being plagued by seizures. The dozens of doctors and specialists agree on 2 things. One is they don't know what to do. Two is I should already be dead and what am experiencing now is my body giving out. The doctors have arranged hospice care and sent me home to await death because they have no idea how to help me.

I AM ONLY 32 YEARS OLD! I HAVE A 7 YEAR OLD MIRACLE SON! (ABVD has a 99% sterility rate). I have fought 2 separate forms of cancer for 14 years with His grace. . I am eternally grateful to God for the time I have been given. Despite the doctors reports and the vultures circling overhead I am still in this fight!!!! Science only goes so far, then comes God!

I just need your help, any kind of help you can offer. If you have some of the same symptoms or insight that might helpful. If you had some life threatening problems after receiving these drugs please share your experience with me in the hope that we may be able to help each other or someone else. If you don't have these problems I am overjoyed for you, truly I am! Perhaps you would be kind enough to say a prayer for my family and I and add us to your church prayer request list. I am more than happy to pray for you as well.

I need you, my fellow warriors, to please do what you can. Perhaps the help I pray for may not come in time to save my life, but it is our children and their future that is far more important than me. I sincerely thank you for listening, and hope to hear from you soon. May you have a blessed life and a joyous holiday season.

Dre

Dear Dre,

I'm so sorry to hear about your experience. I have been given the same cocktail, ABVD and also experienced severe bone pain. The oncologist suggested that she never heard of this side-effect before. I found out on my own mostly, that the bone pain is caused by Vinblastine. Someone who also was on Vinblastine, told me that she experienced several bone fractures while on chemo. So, unfortunately you are not alone. I'm so sorry you are experiencing this.

As far as advice about pain management, I wish I had something wise to say. Obviously, pain meds help. What I found relieved my pain some, was soaking in baths with a ton of Epson salt...you might want to check with your doctor to make sure that's ok for you. I also surprisingly found a bit of confort from using Ben Gay...it kind of numbed the pain. I'm sorry if my advice is silly, useless. 

 How are you doing now? I hope you are doing better...that your doctors were able to find a way to treat you. I'll definitely pray for you!

 Wishing you the best of health!

Adri

 

Thank you Adrian! I really appreciate your response and what you had to say. Only one other person responded but they voilated the TOS so I never got to read what they had to say. My situation remains the same. I am so sorry for your pain. I really appreciate knowing which drug caused it. My bones seem to be shrinking up and deteriorating. How about yours? Where is your pain at? Have you had any other problems that continued long after Chemotherapy was over?

Thank you again for being so helpful! I pray you're doing well.

Take Care,
Dre

 

On 1/20/2009 LilMsDre wrote:

Thank you Adrian! I really appreciate your response and what you had to say. Only one other person responded but they voilated the TOS so I never got to read what they had to say. My situation remains the same. I am so sorry for your pain. I really appreciate knowing which drug caused it. My bones seem to be shrinking up and deteriorating. How about yours? Where is your pain at? Have you had any other problems that continued long after Chemotherapy was over?

Thank you again for being so helpful! I pray you're doing well.

Take Care,
Dre

 

Hi Dre,

I've only had on chemo session so far, close to two weeks ago. I had this terrible bone pain after the first session. It started two days after the chemo treatment. My next chemo session is in a couple of days on Tuesday. I don't know yet what to expect, or whether this bone pain will happen again.
Have you tried talking to your oncologists about this? Are you in remission now?

I really hope for the best for you...and you will be in my prayers!
Best,
Adri

 

hi Dre your probably hearing this a lot lately sorry for what your going through and as you know the high dose chemo has done a lot of damage to your body Bones have an outer layer that is like a thin skin or membrane (mem-brain). This membrane is called the periosteum (per-eye-os-tee-um). The periosteum can be thick and is filled with blood vessels that help feed the bone. Many nerves also fill the periosteum. the  bones contain thousands of living cells that are replaced as they die. Like other organs in the body, blood brings food and oxygen to bones. The blood also removes waste - you might say that blood takes out the garbage! because a lot of these cells are dead your bones cant Funston in this way any more but you bones are not completely dead as chemo only attacks dividing cells so the one at rest it leaves alone (So there are still some cell left to repear the damage) it all so attacks nerves as well I think your body cells will be able to repair this damage enough at first so it will be tolerable to help this see your doctor about  taking the right minerals  and vitamins to repair the mineralized osseous tissue, also called bone tissue that gives it rigidity and honeycomb-like three-dimensional internal structure. to do this and give it more of a chance to heal ask them  can you take calcium and vitamin D3 and fish oil to repair nerves high dose mineral and b group vitamins Chia Seeds will help with intestinal damage your doctor may send you to a dietatision just don’t lose hope take Care and God bless Ray  

 

On 12/19/2008 LilMsDre wrote:

This is my first time here but I am not a newbie in dealing with the aftermath of cancer and excruciating pain. I am begging for ANY help, support, or advice related to complications and chronic pain. Here's the "Readers Digest" version but if you can help in any way I'll happily provide any details. I received the Adriomyacin, Bleomyacin, Vincristine, and Dicarbozine (DTIC) chemo cocktail. After 2 treatments I began experiencing terrible pain in my hips and some tail bone and buttock pain. This pain has increased so badly that I have spent the majority of the following years bedridden. I have had more surgeries than I can count, and nearly died 18 times from various complications that no one can definitively diagnose. I have critical hypokalemic crashes (low potassium which causes heart failure and all muscles to stop working) and this year began being plagued by seizures. The dozens of doctors and specialists agree on 2 things. One is they don't know what to do. Two is I should already be dead and what am experiencing now is my body giving out. The doctors have arranged hospice care and sent me home to await death because they have no idea how to help me. I AM ONLY 32 YEARS OLD! I HAVE A 7 YEAR OLD MIRACLE SON! (ABVD has a 99% sterility rate). I have fought 2 separate forms of cancer for 14 years with His grace. . I am eternally grateful to God for the time I have been given. Despite the doctors reports and the vultures circling overhead I am still in this fight!!!! Science only goes so far, then comes God! I just need your help, any kind of help you can offer. If you have some of the same symptoms or insight that might helpful. If you had some life threatening problems after receiving these drugs please share your experience with me in the hope that we may be able to help each other or someone else. If you don't have these problems I am overjoyed for you, truly I am! Perhaps you would be kind enough to say a prayer for my family and I and add us to your church prayer request list. I am more than happy to pray for you as well. I need you, my fellow warriors, to please do what you can. Perhaps the help I pray for may not come in time to save my life, but it is our children and their future that is far more important than me. I sincerely thank you for listening, and hope to hear from you soon. May you have a blessed life and a joyous holiday season. Dre

 

Hope you are hanging in there, newbie.  I am stage IV and have recurring hodgkin's disease.  Abvd did not work, but I have not missed one day of work since my diagnosis from 3/17/2006.  Pain can be decreased by just diet changes.  Sugar inhances pain and high acid foods also.  Go sugar free,no dietsugar substitutes,and eat alkaline foods .  Cancer, all cancer, thrives in an acidic enviroment, so trying to alkanize your body systemically will not only help with pain but will slow the cancer down.Get the book" Outsmart Your Cancer". -mr.t

 

On 12/19/2008 LilMsDre wrote:

This is my first time here but I am not a newbie in dealing with the aftermath of cancer and excruciating pain. I am begging for ANY help, support, or advice related to complications and chronic pain. Here's the "Readers Digest" version but if you can help in any way I'll happily provide any details. I received the Adriomyacin, Bleomyacin, Vincristine, and Dicarbozine (DTIC) chemo cocktail. After 2 treatments I began experiencing terrible pain in my hips and some tail bone and buttock pain. This pain has increased so badly that I have spent the majority of the following years bedridden. I have had more surgeries than I can count, and nearly died 18 times from various complications that no one can definitively diagnose. I have critical hypokalemic crashes (low potassium which causes heart failure and all muscles to stop working) and this year began being plagued by seizures. The dozens of doctors and specialists agree on 2 things. One is they don't know what to do. Two is I should already be dead and what am experiencing now is my body giving out. The doctors have arranged hospice care and sent me home to await death because they have no idea how to help me. I AM ONLY 32 YEARS OLD! I HAVE A 7 YEAR OLD MIRACLE SON! (ABVD has a 99% sterility rate). I have fought 2 separate forms of cancer for 14 years with His grace. . I am eternally grateful to God for the time I have been given. Despite the doctors reports and the vultures circling overhead I am still in this fight!!!! Science only goes so far, then comes God! I just need your help, any kind of help you can offer. If you have some of the same symptoms or insight that might helpful. If you had some life threatening problems after receiving these drugs please share your experience with me in the hope that we may be able to help each other or someone else. If you don't have these problems I am overjoyed for you, truly I am! Perhaps you would be kind enough to say a prayer for my family and I and add us to your church prayer request list. I am more than happy to pray for you as well. I need you, my fellow warriors, to please do what you can. Perhaps the help I pray for may not come in time to save my life, but it is our children and their future that is far more important than me. I sincerely thank you for listening, and hope to hear from you soon. May you have a blessed life and a joyous holiday season. Dre

Greetings,

A herniated disk will give you hip and tail bone pain.  If you have not had an MRI to rule out this diagnosis, ask your dr.