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Friends and Family Affected by Myeloma

Any similarities?

#1

Hi...thanks for being there. My husband has lost 30 lbs since the symptoms started, June 2015 This is the 2nd round of Revlimid/Dex/V. He is lightheaded, depressed, back fractures with pain. Are these normal? He is on pain patch 75...All meds mention lightheaded, sleep issues....I have not read much on losing weight although I am told everyone is different...I will check back in later.

Greatly appreciate your support line!

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#2

Caretaker, I'm sorry there haven't been any responses yet, but now that the summer holidays are over, I think you'll find that you get a bit more input.

Hang in there, and hang out here!

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#3

Hi Caretaker, So sorry to read about all your husband's troubles. I read your profile, and saw he had a triple by-pass just a few months before the mm diagnosis - a very tough year for you both!

The 30-pound weight loss since June sounds excessive to me, though I'm a patient, not a doctor. May I ask how old he is? And was he a pretty big guy when the weight loss began? Is he eating well? Some of these chemo agents can alter the way food tastes - it did for me - and that can suppress appetite. As can depression. It's quite understandable that he's depressed - not only this disease to contend with, but also getting this news shortly after the bypass surgery. It would be strange NOT to be depressed! Are the docs treating him for depression? And I assume the hematologist is in or has been in contact with the cardiologist?

I was lucky in that my myeloma was discovered before it got to the point of bone fractures, although I had some lesions beginning in some bones. But yes - bone weakness and fractures are quite common, especially in the spine which can be quite painful. If you've seen the interview with newsman Tom Brokaw, that's what he's dealing with. Is your husband receiving infusions of Zometra or APD or one of the other bone-strengthening bisphosphonates? When the chemo gets the myeloma in check, regular infusions of one of those can help to rebuild the bone and help prevent future fractures.

I was on a different chemo protocol than your husband, the only common agent is the Dex. But all I can say is, tell him to hang in there, this disease CAN be quite responsive to treatment (it was for me). For many people, it can be managed quite effectively. So there's reason for hope. I really feel for YOU, Caretaker. I know how hard my own journey has been on my husband, I wouldn't trade places with him for anything. You are both in my thoughts and prayers.

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#4

Hi… My husband also has major sleep disruption with the Dex. He had to accept that he would need to take a pill, sometimes two, to get the sleep he needs. He is also experiencing some depression which makes sleep critical. You have multiple issues to deal with and my heart goes out to you. This is a great site for support.

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#5

Hi ! Thanks! He is on Lexipro for depression, I am not sure if it has kicked in yet. He does get Zometa infusion every few weeks. And he is realizing he needs to do more walking. We have a treadmill fortunately. He has not used it that much. Looking into PT next week. Earlier, an ortho doc looked at everything and said he thinks he has a separate issue, stenosis of the spine as well, so he got a shot Thursday. It may or may not work, it is worth a try. However he is dizzy, which is scary for maintaining his balance walking. Dr. Hemo says it is due to BP rx. DR.Heart dr says it is the rx from chemo. So he is off BP now. Time will tell. He was 185, in June. Claimed to be 5'10", not :) Maybe at one time he was. He was measured at 5'3" recent month and 156 and seems to be holding now. No muscles. It seems the doc says eat whatever he wants, which is not much as his taste buds have changed, also, paying attention to heart healthy as well. We are working on eating more meals during the day too. We have Boost, however that has lots of sugar, sugar feeds cancer. So, all in moderation.

I read dizziness can be from low red blood cells. Of course I read that after the dr appt. yesterday. So, looking at the blood test results, that is below normal. Not all tests from before were run, so I cannot compare some of the ones I understand are important. We were told he is responding well...I may contact the doc at the MM cancer center in Balto, MD and see what they say. I am getting familiar with some of the blood test names. Just not sure which ones are the ones to be focusing on.

Also, nutritionally, healthy eating is what we do, and now I will check to see what in particular is good for increasing red blood cells. It is a balancing act here. I am sure for all of us.

Re: sleep - I have started reading to my husband, which relaxes him. Reading in the morning often, and evening. He has become very sensitive to what is on t.v. avoiding shows with violence, news...so, Hallmark works at times. He naps as well.

To get him out of our home, I started taking him on rides in the morning after breakfast. He is not driving since he has the dizziness. (Dizziness seems to be going on too long. Months.). He agreed to go to the local restaruant/bar with our neighbors/friends again,. I suppose that is part of the depression. He has shrunk, lost weight and personality has changed. He is getting used to it. No energy, we did stay for less than 2 hours, which allowed others to visit with him, and to stay within view of each other, comfort for him.

He gets nervous/anxious if I leave for errands. We are working it out..Whew...he is napping, I am sitting next to him.. This gave me time to share. Thanks for being there. Has anyone had such dizziness? I appreciate you all! Blessings to you all!

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#6



Caretaker- wife said:

Hi ! Thanks! He is on Lexipro for depression, I am not sure if it has kicked in yet. He does get Zometa infusion every few weeks. And he is realizing he needs to do more walking. We have a treadmill fortunately. He has not used it that much. Looking into PT next week. Earlier, an ortho doc looked at everything and said he thinks he has a separate issue, stenosis of the spine as well, so he got a shot Thursday. It may or may not work, it is worth a try. However he is dizzy, which is scary for maintaining his balance walking. Dr. Hemo says it is due to BP rx. DR.Heart dr says it is the rx from chemo. So he is off BP now. Time will tell. He was 185, in June. Claimed to be 5'10", not :) Maybe at one time he was. He was measured at 5'3" recent month and 156 and seems to be holding now. No muscles. It seems the doc says eat whatever he wants, which is not much as his taste buds have changed, also, paying attention to heart healthy as well. We are working on eating more meals during the day too. We have Boost, however that has lots of sugar, sugar feeds cancer. So, all in moderation.

I read dizziness can be from low red blood cells. Of course I read that after the dr appt. yesterday. So, looking at the blood test results, that is below normal. Not all tests from before were run, so I cannot compare some of the ones I understand are important. We were told he is responding well...I may contact the doc at the MM cancer center in Balto, MD and see what they say. I am getting familiar with some of the blood test names. Just not sure which ones are the ones to be focusing on.

Also, nutritionally, healthy eating is what we do, and now I will check to see what in particular is good for increasing red blood cells. It is a balancing act here. I am sure for all of us.

Re: sleep - I have started reading to my husband, which relaxes him. Reading in the morning often, and evening. He has become very sensitive to what is on t.v. avoiding shows with violence, news...so, Hallmark works at times. He naps as well.

To get him out of our home, I started taking him on rides in the morning after breakfast. He is not driving since he has the dizziness. (Dizziness seems to be going on too long. Months.). He agreed to go to the local restaruant/bar with our neighbors/friends again,. I suppose that is part of the depression. He has shrunk, lost weight and personality has changed. He is getting used to it. No energy, we did stay for less than 2 hours, which allowed others to visit with him, and to stay within view of each other, comfort for him.

He gets nervous/anxious if I leave for errands. We are working it out..Whew...he is napping, I am sitting next to him.. This gave me time to share. Thanks for being there. Has anyone had such dizziness? I appreciate you all! Blessings to you all!

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#7

Hi caretaker, I was just reading your last posts and was wondering how your hubby is dolng now? We seem to have a lot of same trouble with effects of meds. Hope you are doing better. WVjim

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#8

Hi again, caretaker. Yes, taste bud changes are common - but after he finishes treatment, they do revert back to normal. I just kept trying different things until I found something that tasted "right". Not easy when you're also trying to eat healthy! I also switched to organic whenever possible - better late than never, I guess. Suddenly, the higher price for the same food didn't seem as important if it meant lower chance of traces of pesticides and other potentially harmful stuff entering my system. If his red count is low, that's anemia and most docs say increase red meat consumption. But also poultry, seafood, beans, leafy green veggies (spinach is particularly good). But with the dizziness ongoing for so long, I would bet it's related to one of the drugs he's on. Regarding sleep, dexamethasone can really mess with that. I'm glad he's doing more walking, important to keep moving! And make sure he drinks TONS of filtered or bottled water - at least 2 quarts every single day. That will help his body deal with all the stuff being poured into him. Maybe doing some things to help himself - even something as little as setting a goal of drinking 2 quarts of pure water daily - will help him feel like he has some control of his life and destiny again, and that could help with the depression? I found that when I felt I was doing something to help myself, it gave me a sense of not being quite so helpless, and that in turn I think helped me with every aspect of coping with this disease and its treatment. It's a bumpy ride, that's for sure. Bless you for all you are doing to help him, he's a very lucky guy to have you.

wvjim said:



Caretaker- wife said:

Hi ! Thanks! He is on Lexipro for depression, I am not sure if it has kicked in yet. He does get Zometa infusion every few weeks. And he is realizing he needs to do more walking. We have a treadmill fortunately. He has not used it that much. Looking into PT next week. Earlier, an ortho doc looked at everything and said he thinks he has a separate issue, stenosis of the spine as well, so he got a shot Thursday. It may or may not work, it is worth a try. However he is dizzy, which is scary for maintaining his balance walking. Dr. Hemo says it is due to BP rx. DR.Heart dr says it is the rx from chemo. So he is off BP now. Time will tell. He was 185, in June. Claimed to be 5'10", not :) Maybe at one time he was. He was measured at 5'3" recent month and 156 and seems to be holding now. No muscles. It seems the doc says eat whatever he wants, which is not much as his taste buds have changed, also, paying attention to heart healthy as well. We are working on eating more meals during the day too. We have Boost, however that has lots of sugar, sugar feeds cancer. So, all in moderation.

I read dizziness can be from low red blood cells. Of course I read that after the dr appt. yesterday. So, looking at the blood test results, that is below normal. Not all tests from before were run, so I cannot compare some of the ones I understand are important. We were told he is responding well...I may contact the doc at the MM cancer center in Balto, MD and see what they say. I am getting familiar with some of the blood test names. Just not sure which ones are the ones to be focusing on.

Also, nutritionally, healthy eating is what we do, and now I will check to see what in particular is good for increasing red blood cells. It is a balancing act here. I am sure for all of us.

Re: sleep - I have started reading to my husband, which relaxes him. Reading in the morning often, and evening. He has become very sensitive to what is on t.v. avoiding shows with violence, news...so, Hallmark works at times. He naps as well.

To get him out of our home, I started taking him on rides in the morning after breakfast. He is not driving since he has the dizziness. (Dizziness seems to be going on too long. Months.). He agreed to go to the local restaruant/bar with our neighbors/friends again,. I suppose that is part of the depression. He has shrunk, lost weight and personality has changed. He is getting used to it. No energy, we did stay for less than 2 hours, which allowed others to visit with him, and to stay within view of each other, comfort for him.

He gets nervous/anxious if I leave for errands. We are working it out..Whew...he is napping, I am sitting next to him.. This gave me time to share. Thanks for being there. Has anyone had such dizziness? I appreciate you all! Blessings to you all!

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#9

Hi wvjim, & Tammy,

He is still experiencing dizziness, weak legs now, arms, shakiness in hands. However, he is in PT and doing well I think. He was doing great with Lexipro until we realized he was taking too much! So, back on regular dose, he is experiencing the depression not as much as before, but he recognizes it. Tomorrow we meet with the onc/hemo doc. Hubby is off, been off BP meds, and doing well with his BP, monitoring it daily usually am and pm. So, we now know the dizziness is not from that. Trying to see if the Valcyclovir can be changed....to Acyclavir . Maybe less side effects. He also has the sunburn look after he takes the Val. along with tiny blood blisters or mini hematomas. Finally, we will get some answers. With the frequent urination at night, I wonder if his urine should be checked. IT has not been done since the beginning. Good news, he made breakfast, lunch and started dinner today. He is focusing on what he CAN do, which is a great help. Taste buds lousy. Spicey food ok. He has not driven for months. His weight seems to have stabilized to 157, he drinks lots of Powerade with water, for electrolytes and vitamins. Some juice. Our responsibilities are shifting....we are adjusting...how are you doing? Thanks for checking in!

wvjim said:

Hi caretaker, I was just reading your last posts and was wondering how your hubby is dolng now? We seem to have a lot of same trouble with effects of meds. Hope you are doing better. WVjim

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#10

Good luck with the meeting with hem/onc, I hope you get some good news. I just got some not-so-good news from mine, a recent CT shows I have new lesions starting so even though my recent blood values are pretty good, I've officially relapsed and will be back in treatment next week. Well, I had a nice reprieve of 19 months without any meds at all, sorry to see that end but that's the way it is with MM. Ups and downs.

I'm glad to read that your hubby seems to be adjusting and coping better, even though he still has lots of side effects. GREAT that his weight has stabilized, also that he's preparing meals and focusing on the positives, like things he can do. When did he begin treatments? How old is he? Super that he's going to PT, and that it seems to be helping!

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#11

Hi all, He is 68 now. His wt160 as of 9/25/2015. Treatment started in July 2015. Blood tests are going in right direction we are told. I can chart them now, once loaded on the portal. I will catch up soon. Daily dex is being weaned over 2 weeks. He was switched to Acyclovir. Hopefully some of the side effects will ease up. He does PT, & got a shot for back pain, it helped some. Another shot is scheduled soon. With him doing dishes and some meals, that is a great help for me. Sleep issues still. (for me: my bro died last week, funeral yesterday.) .He often sleeps lot's during the day. He is nervous/anxious if I go out. He is getting a bit better. We are "geriatric dating" per my neighbor. Doctor appointments. Overall, we are settling in with the new normal. I am looking to go to a meeting in Wash DC on MM, Nov 14. Maybe learn something new...or just learning! Tammy: So sorry for your relapse! WVjim - any luck with your side effects? You all are in my prayers too! Blessings and good night!

S

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#12

Thanks for the update, and great to hear that his numbers are going in the right direction! Hope they can get the other issues - especially sleep! - sorted out soon. Getting off the dex will absolutely help in that regard. So sorry to learn of your brother's passing, a very tough time for you right now. Had to laugh at the "geriatric dating" line - how true! Yes, the new normal, and you DO adjust. Just continue to hang in there. I'm 3 days into treating this relapse, so far so good.

Caretaker- wife said:

Hi all, He is 68 now. His wt160 as of 9/25/2015. Treatment started in July 2015. Blood tests are going in right direction we are told. I can chart them now, once loaded on the portal. I will catch up soon. Daily dex is being weaned over 2 weeks. He was switched to Acyclovir. Hopefully some of the side effects will ease up. He does PT, & got a shot for back pain, it helped some. Another shot is scheduled soon. With him doing dishes and some meals, that is a great help for me. Sleep issues still. (for me: my bro died last week, funeral yesterday.) .He often sleeps lot's during the day. He is nervous/anxious if I go out. He is getting a bit better. We are "geriatric dating" per my neighbor. Doctor appointments. Overall, we are settling in with the new normal. I am looking to go to a meeting in Wash DC on MM, Nov 14. Maybe learn something new...or just learning! Tammy: So sorry for your relapse! WVjim - any luck with your side effects? You all are in my prayers too! Blessings and good night!

S

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