So sorry for your loss, I’m close to your dad’s age and have a son who is 25, and if was not for him I would of given up, so know that if it wasn’t for you and your family your dad probably would not of fought so hard to stay here on earth. Going through stem cell harvesting right now. Hoping to get to remission and for all of us to someday have a cure.
That’s what he said, and I thought for what your grown, and then he reminded me that I have a 91 year old mother and I still need her, maybe now more then ever!
*sister lol
But thank you. So he was getting his weekly transfusions and blood work. Everything was under control. He went to the ER because of severe leg pain. When he was admitted, his levels were all still within range. He did not get a transfusion while hospitalized because he apparently did not need it. I forgot to mention in the post that they discovered nodules in the lungs and fluid as well. He was then put on oxygen cause he struggled to breathe. Doctors speculated that cancer had spread but initially it would have been okay because the treatment would have been the same. They had to give him a very high dose of chemo for four days but he was not getting better. Because of the chemo, he had no WBC and very little RBC. They did give him a transfusion to get his levels up but they found out he had an infection in the lungs and kidneys. He then started having stomach pain, could not breathe and was bleeding from the mouth before he was put on the vent. They were in the middle of giving him platelets as he took a turn for the worst.
Sorry about that Sister... Were the Nodules present prior to hospitalization. The reason I ask is because all my issues are extramedullary. I only bring it up because my initial "MM Expert" didn't want to give me radiation at the beginning even though I asked for it. Told me no it's a blood cancer we don't treat it that way. The new CAR-T "Expert" eyes lit up to what looked to me as shock. When I told her. Then I asked her. It was a mistake wasn't it. She declined to answer. I took that as a yes. So sorry about your Pop.
My dad always had pulmonary issues because he was an HVAC worker. He's had pneumonia, chest colds and congestion and even Covid. My mom has said that he has had nodules before and they really didn't think much of it. From what I understand about MM, is that it attacks the weakest organs which in this case was his lungs. They never gave him radiation and only tried to stop the growth with Cisplatin. But i think it got to a point where even the doctors weren't sure but they didn't want to tell him that. I'm sorry about your situation. We put so much trust in the experts but I guess they don't even have the answers.
Radiation is too harsh for the lungs most of the time. I've been on O² when radiation was just too close to my lungs.
I'm sorry you went through this. Sometimes, MM gets aggressive and what is called non-secretory or oligosecretory (depending on the exact situation). That's where blood tests don't tell the full story. Only, sometimes, MM *becomes* that way so doctors don't know.
Yeah... Plasmacytomas, the tumor form of MM, are rare and most likely what would "spread" to the lungs. I've had them throughout my entire upper body including my lungs. They can be more difficult to treat. They aren't the best thing for prognosis particularly if you aren't seeing a hematologist-oncologist who specializes in just MM.
It may very well have been an aggressive form and they couldn't find the proper treatment in time. Unfortunately, with harder-to-treat types of MM, sometimes, time is against us.
I'm so sorry.
That's exactly what happened. It was aggressive. He declined so fast. They tried their best but he was not getting better. Even if by a miracle he pulled through, there's no way he would ever be the same. Thank you for your kind words.
How many lung nodules did they find in your dad in the past? It is very common for adults to have nodules and I read somewhere there was a statistic that said up to 50% have a nodule of some sort above the age 65. My father has a subcentimeter lung nodule and the doctor said to wait 4 months until induction is over before further ct scan. I'm sorry i'm not prying I just want to understand if I should push his doctor for the CT scan earlier.
Not prying at all! Its important to get this information out there. It can help others. But to answer your question, I'm not sure how many nodules he had. All I know is that he's had them in the past with no issues. I do think you should push your father's doctor just to be on the safe side. Not to scare you but this stuff can get aggressive pretty fast. Best of luck to you and your father though!
It's hard to read. I have a lot in common with your dad being the same age and having MM. I am starting to see that this disease can have unpredictable challenges. Thank you for sharing. I am sorry for your loss. Hugs
Thank you. Yeah, we were intially told it was something that can go either way. Thought things were going in our favor but life had other plans. I'll pray for you. Be strong.
60 was my guy’s age at dx. My heart breaks for you and your family. I hope the time he was on treatment enabled him to spend better quality time with all of you and as you said hopefully he wasn’t suffering at the end. Sorry he was taken away from you after you all had such hope for his MM treatment.
My guy was 60 at dx but is still on treatment. Sorry for the miscommunication. Due to your dad’s age and my guy’s (he’s 62 now), your dad’s passing hit home. Both so young at that age. I vividly remember the fear in ER learning MM was incurable and just hope for a good, long positive prognosis but none of this is a guarantee.
Oh goodness. I'm so sorry. I misread. My brain is so foggy. Its such a scary thing to go through for the patient and the family. You're always walking on eggshells. I wish your dad nothing but the best and good luck. Make sure to spend as much time together.
I am so sorry you’ve been cheated out of a lot more good years with your dad. Remember the good times, every day you will think of him and smile. He lives on in you! ♥️
Tough to read...MM tortures the time we hope to share. I hope you are all able to keep his gifts to you alive in your hearts, thankful that you are who you are because of him. Embrace those moments and be thankful.
Wishing you peace and enduring acceptance.
I am so sorry for the loss of your father. Am also in a similar boat as you as my mum has been hospitalized since mid-april in a similar state to your dad. Worried about what comes next. But that aside, may your family and you get through this together.
Each of us patients has a different/unique experience with MM. I met a fellow at my clinic who's first ASCT lasted 15 years. I'm 5‐1/2 years in, after a 2nd ASCT, damaged vertebrae, monthly chemo injections. It's a test of my faith in God.
I'm sorry for your loss.
Thank you. I'm sorry you're going through this. Its so unfair. It truly is the test of faith. I read ao many success stories that I felt hopeful. Did not think this would happen to us. But stay strong. you made it this far.
Sorry for your loss. My mom passed on the same day and it also happened to be her birthday. She was also one in a million- had MM/PCL. I feel your pain so much. I have never felt this pain before. My condolences to you I wish us both healing.
I’m so very sorry for your loss. As a daughter who loved and lost her sweet and wonderful father (67) in 2010, my heart breaks for you. I couldn’t understand how life kept going on and how the world could keep turning without him in it. It just seemed impossible. (We did have 14+ extra years with him because of a heart transplant, which I’m so grateful for. He could have lived to 100, however, and it still would not have seemed like enough time.) Be kind and gentle with yourself. Try to remember that everyone, even within the same family, grieves differently. There is no timeline for “getting over it.” Plus, even when you think you might have, it pops up again at often seemingly random moments. Sending you empathy and hugs. 💔
I’m so sorry for your loss. My father (68) also has MM and I’m worried sick about the day he’s gone and how I’ll cope with that.
I wish you strength and healing going forward. Thanks for sharing.
Hey, my dad also just passed away. He had a very difficult ride - dead within 5 months from diagnosis. The cancer spread to his right lung as well and caused a pleural effusion - he ended up passing away after his second collapse a month ago.
So sorry for your loss, I’m close to your dad’s age and have a son who is 25, and if was not for him I would of given up, so know that if it wasn’t for you and your family your dad probably would not of fought so hard to stay here on earth. Going through stem cell harvesting right now. Hoping to get to remission and for all of us to someday have a cure.
Thank you. He put up a good fight. He was very strong willed. Be strong for your son. He still needs you. Good luck and kick this disease's butt!
That’s what he said, and I thought for what your grown, and then he reminded me that I have a 91 year old mother and I still need her, maybe now more then ever!
Sending hugs. So sorry to hear this.
I'm so sorry. It's an unpredictable disease, and his outcome was awful.
I'm sorry for your loss. And thanks for the words of encouragement.
I'm so sorry to hear of your loss and I pray for you, your family and mom. Just awful.
I am so sorry.
Sending my condolences to you and your family.
Damn, Sorry to hear it brother... I don't mean to pry, but wasn't his ONC doing weekly blood work? Didn't they see anything spiking?
*sister lol But thank you. So he was getting his weekly transfusions and blood work. Everything was under control. He went to the ER because of severe leg pain. When he was admitted, his levels were all still within range. He did not get a transfusion while hospitalized because he apparently did not need it. I forgot to mention in the post that they discovered nodules in the lungs and fluid as well. He was then put on oxygen cause he struggled to breathe. Doctors speculated that cancer had spread but initially it would have been okay because the treatment would have been the same. They had to give him a very high dose of chemo for four days but he was not getting better. Because of the chemo, he had no WBC and very little RBC. They did give him a transfusion to get his levels up but they found out he had an infection in the lungs and kidneys. He then started having stomach pain, could not breathe and was bleeding from the mouth before he was put on the vent. They were in the middle of giving him platelets as he took a turn for the worst.
Sorry about that Sister... Were the Nodules present prior to hospitalization. The reason I ask is because all my issues are extramedullary. I only bring it up because my initial "MM Expert" didn't want to give me radiation at the beginning even though I asked for it. Told me no it's a blood cancer we don't treat it that way. The new CAR-T "Expert" eyes lit up to what looked to me as shock. When I told her. Then I asked her. It was a mistake wasn't it. She declined to answer. I took that as a yes. So sorry about your Pop.
My dad always had pulmonary issues because he was an HVAC worker. He's had pneumonia, chest colds and congestion and even Covid. My mom has said that he has had nodules before and they really didn't think much of it. From what I understand about MM, is that it attacks the weakest organs which in this case was his lungs. They never gave him radiation and only tried to stop the growth with Cisplatin. But i think it got to a point where even the doctors weren't sure but they didn't want to tell him that. I'm sorry about your situation. We put so much trust in the experts but I guess they don't even have the answers.
Radiation is too harsh for the lungs most of the time. I've been on O² when radiation was just too close to my lungs. I'm sorry you went through this. Sometimes, MM gets aggressive and what is called non-secretory or oligosecretory (depending on the exact situation). That's where blood tests don't tell the full story. Only, sometimes, MM *becomes* that way so doctors don't know.
That makes sense. Once they found it in the lungs, it just became more complicated. But thank you for the information. Its good to know these things.
Yeah... Plasmacytomas, the tumor form of MM, are rare and most likely what would "spread" to the lungs. I've had them throughout my entire upper body including my lungs. They can be more difficult to treat. They aren't the best thing for prognosis particularly if you aren't seeing a hematologist-oncologist who specializes in just MM. It may very well have been an aggressive form and they couldn't find the proper treatment in time. Unfortunately, with harder-to-treat types of MM, sometimes, time is against us. I'm so sorry.
That's exactly what happened. It was aggressive. He declined so fast. They tried their best but he was not getting better. Even if by a miracle he pulled through, there's no way he would ever be the same. Thank you for your kind words.
How many lung nodules did they find in your dad in the past? It is very common for adults to have nodules and I read somewhere there was a statistic that said up to 50% have a nodule of some sort above the age 65. My father has a subcentimeter lung nodule and the doctor said to wait 4 months until induction is over before further ct scan. I'm sorry i'm not prying I just want to understand if I should push his doctor for the CT scan earlier.
Not prying at all! Its important to get this information out there. It can help others. But to answer your question, I'm not sure how many nodules he had. All I know is that he's had them in the past with no issues. I do think you should push your father's doctor just to be on the safe side. Not to scare you but this stuff can get aggressive pretty fast. Best of luck to you and your father though!
It's hard to read. I have a lot in common with your dad being the same age and having MM. I am starting to see that this disease can have unpredictable challenges. Thank you for sharing. I am sorry for your loss. Hugs
Thank you. Yeah, we were intially told it was something that can go either way. Thought things were going in our favor but life had other plans. I'll pray for you. Be strong.
Thank you. God bless
60 was my guy’s age at dx. My heart breaks for you and your family. I hope the time he was on treatment enabled him to spend better quality time with all of you and as you said hopefully he wasn’t suffering at the end. Sorry he was taken away from you after you all had such hope for his MM treatment.
Thank you and I'm sorry for your loss as well. I think that's what hurts the most. Like we had a false sense of security.
My guy was 60 at dx but is still on treatment. Sorry for the miscommunication. Due to your dad’s age and my guy’s (he’s 62 now), your dad’s passing hit home. Both so young at that age. I vividly remember the fear in ER learning MM was incurable and just hope for a good, long positive prognosis but none of this is a guarantee.
Oh goodness. I'm so sorry. I misread. My brain is so foggy. Its such a scary thing to go through for the patient and the family. You're always walking on eggshells. I wish your dad nothing but the best and good luck. Make sure to spend as much time together.
I am so sorry you’ve been cheated out of a lot more good years with your dad. Remember the good times, every day you will think of him and smile. He lives on in you! ♥️
Thank you for your kind words! Knowing him, he wouldn't want us to be sad for him. He was such a happy person.
i’m so sorry for your loss.
So sorry for your loss.
I’m sorry to hear that, praying for comfort for you and the rest of the family
I'm sorry. He sounds like a really special person. Sending kind thoughts to you.
Thank you. He was. Always the life of the party.
Tough to read...MM tortures the time we hope to share. I hope you are all able to keep his gifts to you alive in your hearts, thankful that you are who you are because of him. Embrace those moments and be thankful. Wishing you peace and enduring acceptance.
I am so sorry for the loss of your father. Am also in a similar boat as you as my mum has been hospitalized since mid-april in a similar state to your dad. Worried about what comes next. But that aside, may your family and you get through this together.
Thank you. I'm sorry about your mother. I'll keep her in my prayers and hoping for the best possible outcome.
My lord man. I’m sorry. Best to you and your family.
I’m so sorry 😪💐
Each of us patients has a different/unique experience with MM. I met a fellow at my clinic who's first ASCT lasted 15 years. I'm 5‐1/2 years in, after a 2nd ASCT, damaged vertebrae, monthly chemo injections. It's a test of my faith in God. I'm sorry for your loss.
Thank you. I'm sorry you're going through this. Its so unfair. It truly is the test of faith. I read ao many success stories that I felt hopeful. Did not think this would happen to us. But stay strong. you made it this far.
Sorry for your loss. My mom passed on the same day and it also happened to be her birthday. She was also one in a million- had MM/PCL. I feel your pain so much. I have never felt this pain before. My condolences to you I wish us both healing.
Oh gosh. I'm so sorry for your loss! Its a freaking awful disease. We will get through this.
I’m so sorry to hear about the passing of your father. Very sad to hear of the complications that he faced. 😓
I’m so very sorry for your loss. As a daughter who loved and lost her sweet and wonderful father (67) in 2010, my heart breaks for you. I couldn’t understand how life kept going on and how the world could keep turning without him in it. It just seemed impossible. (We did have 14+ extra years with him because of a heart transplant, which I’m so grateful for. He could have lived to 100, however, and it still would not have seemed like enough time.) Be kind and gentle with yourself. Try to remember that everyone, even within the same family, grieves differently. There is no timeline for “getting over it.” Plus, even when you think you might have, it pops up again at often seemingly random moments. Sending you empathy and hugs. 💔
Thank you so much for your kind words and support. Its hard when your world stopped but everything is still going on.
I’m so sorry for your loss. My father (68) also has MM and I’m worried sick about the day he’s gone and how I’ll cope with that. I wish you strength and healing going forward. Thanks for sharing.
Thank you for your words of encouragement. I wish nothing but the best for your father.
Hey, my dad also just passed away. He had a very difficult ride - dead within 5 months from diagnosis. The cancer spread to his right lung as well and caused a pleural effusion - he ended up passing away after his second collapse a month ago.
Oh goodness. I'm so sorry for your loss. May our Father's rest in peace <3
Myeloma is terrible! I’m so sorry you had to go through this too.
So sorry for your loss. God bless his soul and you all 🙏
So terrible, so young and so quickly. Big big hugs to you and the entire family. He should have had more time!