I never know how much to say around my developing health needs. I censor aspects of my last year so as to not make others uncomfortable. In the desire I have to seek safe space, learn, and recover, I am simply going to share and let go of the rest.
I am 38 years old. I am transgender, having transitioned eight years ago from female to male. Shortly after Christmas 2015, I endured a brutal sexual assault from someone I knew, trusted, and loved. The physical injury was massive, and the emotional injury has been all consuming.
About 8 weeks or so after the assault, my wife and I learned I had contracted HIV. My health, complicated by the injury to my body, was severely compromised. The replication rate of the virus was aggressive and debilitating. My viral load was enormous and my immune system was decimated. I was extremely ill.
Some aspects of my illness made very little sense to my providers. I had tremendous anemia, I started to experience neuropathy, I was utterly exhausted, and my weight was not improving. My kidney was functioning only at 30% and there were not a lot of answers.
Three weeks ago my doctor confirmed that this was separate from HIV, and it was confirmed I had multiple myeloma.
Due to the complications, I am not a good candidate for chemo right now. I have been put on Fosamax (alendronic acid) and steroids. My HIV regimen has stayed the same.
I will be looking through my participation in the forum to learn more how people who are immune compromised navigate treatment.
I am a loved man with many supports. I just am scared and don't fully understand what is happening to me.
Forums
7 posts
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Re: Navigating multiple myeloma and HIV at the same time
Hi Daxemus,
Wecome to the forum.
You say your are on Fosamax. Generally, myeloma is treated with much stronger IV forms of the bisphosphonate family of drugs that Fosamax is in, namely Zometa (zoledronic acid) or Aredia (pamidronic acid). Were these drugs discussed as potential treating agents?
You say you are on steroids as well. Generally, dexamethasone or prednisone are the steroids used to treat multiple myeloma. Which steroids are you on?
Lastly, have you been seen by a myeloma specialist that understands all of the latest myeloma drug treatments (not just a hematologist / oncologist that may have a few multiple myeloma patients)? I certainly can't speak for your comorbidities, complications, and any HIV drug-interaction concerns that your doctors may have, but I would suggest seeking out a myeloma specialist so that you may explore some of many, newer "not-like-traditional-chemo" drug treatments that are available to multiple myeloma patients these days. If you let us know what city your are in, folks on the forum can suggest some specific facilities or doctors to seek out.
Good luck.
Wecome to the forum.
You say your are on Fosamax. Generally, myeloma is treated with much stronger IV forms of the bisphosphonate family of drugs that Fosamax is in, namely Zometa (zoledronic acid) or Aredia (pamidronic acid). Were these drugs discussed as potential treating agents?
You say you are on steroids as well. Generally, dexamethasone or prednisone are the steroids used to treat multiple myeloma. Which steroids are you on?
Lastly, have you been seen by a myeloma specialist that understands all of the latest myeloma drug treatments (not just a hematologist / oncologist that may have a few multiple myeloma patients)? I certainly can't speak for your comorbidities, complications, and any HIV drug-interaction concerns that your doctors may have, but I would suggest seeking out a myeloma specialist so that you may explore some of many, newer "not-like-traditional-chemo" drug treatments that are available to multiple myeloma patients these days. If you let us know what city your are in, folks on the forum can suggest some specific facilities or doctors to seek out.
Good luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Navigating multiple myeloma and HIV at the same time
Good morning Daxemus,
Thanks for sharing your story here. Multibilly has given you wise advice as to how to approach getting more help too.
I just wanted to say that I also was given Fosamax at the beginning of my myeloma journey. I was diagnosed with osteopenia, and my doctor prescribed this for me. The myeloma diagnosis was missed until about six months later, and when that was confirmed, I was switched over right away to Aredia, which is given by IV.
Although I did get compression vertebral fractures before the diagnosis, I sometimes wonder if the Fosamax treatments protected my back from extreme damage.
Anyways, the bisphosphonate treatments did help with healing.
Thanks for sharing your story here. Multibilly has given you wise advice as to how to approach getting more help too.
I just wanted to say that I also was given Fosamax at the beginning of my myeloma journey. I was diagnosed with osteopenia, and my doctor prescribed this for me. The myeloma diagnosis was missed until about six months later, and when that was confirmed, I was switched over right away to Aredia, which is given by IV.
Although I did get compression vertebral fractures before the diagnosis, I sometimes wonder if the Fosamax treatments protected my back from extreme damage.
Anyways, the bisphosphonate treatments did help with healing.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Navigating multiple myeloma and HIV at the same time
Thank you for the replies.
I have been referred to an oncologist locally that understands HIV comorbidity and multiple myeloma. My wife is a hospice social worker, so we do have access to some solid referring sources and am hopeful he is knowledgeable. I have an appointment for Friday. There is an oncologist in the clinic where I receive HIV-related treatment, and he has been working with my primary care physician, but has admitted he does not consider himself an expert.
I was on Fosamax before in 2006 so it seemed a safe bet to try it again. I had no idea it was an outdated response, though. That's disappointing.
I am on prednisone. Sorry, not used to talking about all of this. Thanks for the patience.
I live in Tucson if anyone has any referrals they recommend. Thanks!
I have been referred to an oncologist locally that understands HIV comorbidity and multiple myeloma. My wife is a hospice social worker, so we do have access to some solid referring sources and am hopeful he is knowledgeable. I have an appointment for Friday. There is an oncologist in the clinic where I receive HIV-related treatment, and he has been working with my primary care physician, but has admitted he does not consider himself an expert.
I was on Fosamax before in 2006 so it seemed a safe bet to try it again. I had no idea it was an outdated response, though. That's disappointing.
I am on prednisone. Sorry, not used to talking about all of this. Thanks for the patience.
I live in Tucson if anyone has any referrals they recommend. Thanks!
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Daxemus - Name: ONealing
- When were you/they diagnosed?: 10/24/2016
- Age at diagnosis: 38
Re: Navigating multiple myeloma and HIV at the same time
With regard to locations in Arizona with multiple myeloma specialists, see:
https://myelomabeacon.org/resources/treatment-centers/#Arizona
I don't know if I would call Fosamax "outdated". The IV bisphosphonates are industrial strength and can have initial side effects and some long-term risks that are much less likely with oral bisphosphonates. So there could very well be a good reason why your doctor prescribed Fosamax instead of something like Zometa, given your overall medical condition.
Likewise, prednisone is a milder, less-potent steroid than dexamethasone (dex) and often has less side-effects than dex. So, it could also be that your doctor selected prednisone due to concerns with your overall medical condition.
In any case, it might be good to discuss these issues more at length with your doc. Hope this helps a bit.
https://myelomabeacon.org/resources/treatment-centers/#Arizona
I don't know if I would call Fosamax "outdated". The IV bisphosphonates are industrial strength and can have initial side effects and some long-term risks that are much less likely with oral bisphosphonates. So there could very well be a good reason why your doctor prescribed Fosamax instead of something like Zometa, given your overall medical condition.
Likewise, prednisone is a milder, less-potent steroid than dexamethasone (dex) and often has less side-effects than dex. So, it could also be that your doctor selected prednisone due to concerns with your overall medical condition.
In any case, it might be good to discuss these issues more at length with your doc. Hope this helps a bit.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Navigating multiple myeloma and HIV at the same time
A few points:
Certainly, the more complex the background medical issues, the more challenging it is to manage the myeloma. Having HIV, or any other sources of immune compromise, creates a challenge. It's challenging as both the myeloma and the treatment can suppress the immune system.
In general, to the extent that the myeloma is causing the problems, it does need to get treated to hope for improvement. Steroids often provide near-term myeloma improvement when used alone.
Aredia often is a good bisphosphonate for patients with imperfect kidneys.
Longer term, I have many HIV patients able to tolerate standard myeloma therapy, and hopefully with a little time, you will as well.
Best of luck.
Certainly, the more complex the background medical issues, the more challenging it is to manage the myeloma. Having HIV, or any other sources of immune compromise, creates a challenge. It's challenging as both the myeloma and the treatment can suppress the immune system.
In general, to the extent that the myeloma is causing the problems, it does need to get treated to hope for improvement. Steroids often provide near-term myeloma improvement when used alone.
Aredia often is a good bisphosphonate for patients with imperfect kidneys.
Longer term, I have many HIV patients able to tolerate standard myeloma therapy, and hopefully with a little time, you will as well.
Best of luck.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: Navigating multiple myeloma and HIV at the same time
Daxemus,
You've already been through a lot to achieve the life that is you. Don't let the fact that you are HIV+ keep you from seeking the best medical help that you can get. I'm so glad that Dr. Hoffman responded to you because in this day and age it isn't uncommon for health care professionals to have people with HIV as their patients.
You might consider contacting a specialist at Mayo in Scottsdale. With myeloma, the specialists often work with a person's local oncologist, and in your case your HIV doctor, to develop a treatment that is good for you and your medical circumstances. It is really important to have a myeloma specialist as part of your team because the available treatments change quite rapidly and a local general oncologist wouldn't necessarily know of them.
Know that you are welcome here and value the fact that you are able to be open about your medical history. It will help each of us to not only help to give you answers to your questions, but may be helpful for another person who may have some of the same history as you.
Nancy in Phila
You've already been through a lot to achieve the life that is you. Don't let the fact that you are HIV+ keep you from seeking the best medical help that you can get. I'm so glad that Dr. Hoffman responded to you because in this day and age it isn't uncommon for health care professionals to have people with HIV as their patients.
You might consider contacting a specialist at Mayo in Scottsdale. With myeloma, the specialists often work with a person's local oncologist, and in your case your HIV doctor, to develop a treatment that is good for you and your medical circumstances. It is really important to have a myeloma specialist as part of your team because the available treatments change quite rapidly and a local general oncologist wouldn't necessarily know of them.
Know that you are welcome here and value the fact that you are able to be open about your medical history. It will help each of us to not only help to give you answers to your questions, but may be helpful for another person who may have some of the same history as you.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
7 posts
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