Hi all,
Tomorrow is the big day. We will get the results of my mother's biopsy. I am a complete nervous wreck, with my anxiety being worse than ever. I just don't want to hear any bad news. I am so lost.
How did you all cope with the diagnosis of yourself or loved ones? What suggestions do you all have?
Forums
Re: Nervous wreck - biopsy results tomorrow for mom
Hi Jaren 2004,
At the time, I didn't think I would live much longer and hence thought about palliative care.
Information from the very helpful and caring members of this board convinced me to 'try' treatment. I started 3 months after surgery and my IgG's were super high. I went on non-aggressive doses of dexamethasone and Revlimid and am still alive two years later (wanted no stem cell transplant) and feel great. Quality of life is important to me.
Should she test positive, then make sure that she understands much about the disease and treatment. That will allow her to make an informed decision. Most of us had myeloma way before we got diagnosed. I know I did!!
Best wishes,
Kate
- Don't be nervous - it will not change anything.
- Once you have the diagnosis, do some research.
- Don't have your mother jump into treatment until she feels ready and good about it (unless there are some good medical reasons).
At the time, I didn't think I would live much longer and hence thought about palliative care.
Information from the very helpful and caring members of this board convinced me to 'try' treatment. I started 3 months after surgery and my IgG's were super high. I went on non-aggressive doses of dexamethasone and Revlimid and am still alive two years later (wanted no stem cell transplant) and feel great. Quality of life is important to me.
Should she test positive, then make sure that she understands much about the disease and treatment. That will allow her to make an informed decision. Most of us had myeloma way before we got diagnosed. I know I did!!
Best wishes,
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Nervous wreck - biopsy results tomorrow for mom
Thanks Kate,
You are right, being nervous will not change much. But my faith is carrying me through this difficult time.
I am glad to hear that you are coping well with your condition and that treatments are working out for you.
Although I have been reading tons of information, I find myself still at such a loss.
You are right, being nervous will not change much. But my faith is carrying me through this difficult time.
I am glad to hear that you are coping well with your condition and that treatments are working out for you.
Although I have been reading tons of information, I find myself still at such a loss.
Re: Nervous wreck - biopsy results tomorrow for mom
Hi Jaren2004. There is no easy way to deal with hearing that you (or someone you love) has cancer. You go through a process similar to grieving. For me, after the initial shock, I got angry and was then very determined that I was going to get into remission. I was not and am not ready to give up.
So I don't. I've been through initial treatment, stem cell transplant, complete remission, then cancer slooowly becoming active again, then it becoming more active and more treatment. Right now, I'm waiting for my next appointment with my oncologist to find out if the reductions in my lambda light chains are enough that I can switch to maintenance treatment. It's been a process, including a process of acceptance that my life is going to be different than I thought it was going to be. But you know what? I still work full time, I still run my house, I still go on vacations, I still have a life.
Please know that we are all here for you.
Dana A
So I don't. I've been through initial treatment, stem cell transplant, complete remission, then cancer slooowly becoming active again, then it becoming more active and more treatment. Right now, I'm waiting for my next appointment with my oncologist to find out if the reductions in my lambda light chains are enough that I can switch to maintenance treatment. It's been a process, including a process of acceptance that my life is going to be different than I thought it was going to be. But you know what? I still work full time, I still run my house, I still go on vacations, I still have a life.
Please know that we are all here for you.
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Nervous wreck - biopsy results tomorrow for mom
Hi all,
Well we got the diagnosis of multiple myeloma today for my mom. Doctor says that she has 50% myeloma cells. His plans for treatment is to start her on Revlimid, Zometa, and Velcade.
My mother took the diagnosis well. I didn't break down in front of her, but now I can't control my emotions. No one wants this for their parents. I'm just lost.
Well we got the diagnosis of multiple myeloma today for my mom. Doctor says that she has 50% myeloma cells. His plans for treatment is to start her on Revlimid, Zometa, and Velcade.
My mother took the diagnosis well. I didn't break down in front of her, but now I can't control my emotions. No one wants this for their parents. I'm just lost.
Re: Nervous wreck - biopsy results tomorrow for mom
Hi Jaren,
I realize this is a very hard time for you. It's easy to jump to worse case conclusions and think of awful scenarios when you or a loved one is first diagnosed. But note that a very large number of multiple myeloma patients respond very well to treatment and lead relatively normal lives. Your Mom will likely make it through all this with only a few, annoying (but not debilitating) side effects during the treatment phase...the side effects from these particular drugs are nothing like the classic cancer chemo side effects you may be envisioning.
If your mom isn't already working with a solid multiple myeloma specialist, my one piece of advice to the two of you would be to seek one out for a second opinion on treatment options. If you let us know what city she is in and which institution she is working with, folks on this forum can make recommendations as to some of the best institutions and/or docs to seek out.
I realize this is a very hard time for you. It's easy to jump to worse case conclusions and think of awful scenarios when you or a loved one is first diagnosed. But note that a very large number of multiple myeloma patients respond very well to treatment and lead relatively normal lives. Your Mom will likely make it through all this with only a few, annoying (but not debilitating) side effects during the treatment phase...the side effects from these particular drugs are nothing like the classic cancer chemo side effects you may be envisioning.
If your mom isn't already working with a solid multiple myeloma specialist, my one piece of advice to the two of you would be to seek one out for a second opinion on treatment options. If you let us know what city she is in and which institution she is working with, folks on this forum can make recommendations as to some of the best institutions and/or docs to seek out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Nervous wreck - biopsy results tomorrow for mom
Oh Jaren, I'm so sorry to hear your news.
Multibilly has shared with you some great advice that everyone in your family should keep in mind. Myeloma is now a very treatable disease. Even though it's typically described as "incurable," more and more people are living a very long time with the disease because of new treatments that have been introduced in recent years, and even more new treatments are on the way.
Also, like Multibilly said, it is very important for your mother's long-term prognosis that she start seeing a myeloma specialist. These specialists are not just hematologist-oncologists that sometimes see myeloma patients in addition to the leukemia and lymphoma patients they see. Myeloma specialists see almost nothing but myeloma patients, and they are usually located in cancer centers at major medical schools.
Let us know how we can be of help.
Multibilly has shared with you some great advice that everyone in your family should keep in mind. Myeloma is now a very treatable disease. Even though it's typically described as "incurable," more and more people are living a very long time with the disease because of new treatments that have been introduced in recent years, and even more new treatments are on the way.
Also, like Multibilly said, it is very important for your mother's long-term prognosis that she start seeing a myeloma specialist. These specialists are not just hematologist-oncologists that sometimes see myeloma patients in addition to the leukemia and lymphoma patients they see. Myeloma specialists see almost nothing but myeloma patients, and they are usually located in cancer centers at major medical schools.
Let us know how we can be of help.
Re: Nervous wreck - biopsy results tomorrow for mom
Thank you all for the advice and I will be sure to take head to all of this new information. My mother will do just fine, and I will be there with her every step of the way. She has to go in weekly for her target chemo treatment. She will take pills and an injection once weekly. This is the start of a serious journey. I will continue to read more and more so that I can be very knowledgeable about the disease. I would like to be able to help others, just like you all are helping me. I have faith that someday this disease will not be so scary as it seems to be to me.
I wish all of you great luck on remissions, and long healthy lives. Thanks again!
I wish all of you great luck on remissions, and long healthy lives. Thanks again!
Re: Nervous wreck - biopsy results tomorrow for mom
Hi Jaren -
Just one more thing to throw in here. I found the first month after my diagnosis to be, by far, the most difficult part of the last several years (which have included a couple of types of drug treatment and a stem cell transplant). It was a very rough few weeks, but that passed. Once I realized that I wasn't dead yet, that there was something of a clear path ahead on what I needed to do, and that I had a pretty good shot at a good number of years ahead of me, I was able to lose that awful feeling and take on the challenges with a spirit of optimism.
I trust that once you're over that absolutely stunning initial pain, you'll also be able to move forward with your mom. She's obviously lucky to have such a devoted caregiver.
Just one more thing to throw in here. I found the first month after my diagnosis to be, by far, the most difficult part of the last several years (which have included a couple of types of drug treatment and a stem cell transplant). It was a very rough few weeks, but that passed. Once I realized that I wasn't dead yet, that there was something of a clear path ahead on what I needed to do, and that I had a pretty good shot at a good number of years ahead of me, I was able to lose that awful feeling and take on the challenges with a spirit of optimism.
I trust that once you're over that absolutely stunning initial pain, you'll also be able to move forward with your mom. She's obviously lucky to have such a devoted caregiver.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Nervous wreck - biopsy results tomorrow for mom
Thank you for your kind words and hope. My mom seems like she is taking this well. Today I seem to be doing better. I know that my mom will have some good days and some bad days. But now I realize that I need to be strong to assist my mom in this fight for life.
Have you all experienced any pain along with your multiple myeloma? My mother has a persistent hip pain and has lost a great amount of weight. The doctor told her that she needs to eat and focus on keeping her weight up ... and to drink plenty of water to help her calcium levels go down.
My mother will start treatment in approximately 3 weeks and she is kind of afraid of getting injections in her stomach. Hopefully she responds well to treatment. God knows I need my mother. It would be hard for me to live without her. I am sure we all feel this way about our loved ones!
Have you all experienced any pain along with your multiple myeloma? My mother has a persistent hip pain and has lost a great amount of weight. The doctor told her that she needs to eat and focus on keeping her weight up ... and to drink plenty of water to help her calcium levels go down.
My mother will start treatment in approximately 3 weeks and she is kind of afraid of getting injections in her stomach. Hopefully she responds well to treatment. God knows I need my mother. It would be hard for me to live without her. I am sure we all feel this way about our loved ones!
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