Has anyone taken a break in between R-Chop treatments bc of weakness and fatigue

Marie12
Marie12 Member Posts: 6

My mother was diagnosed with stage 4 DLBCL in late July 2015 and just finished her third R-CHOP treatment. She was otherwise healthy and very mobile before the diagnosis, 76 years old. She has lost 40 pounds and is extremely weak and fatigued. she can barely walk on her own now and can't be alone. I honestly don't see how she can go through another treatment (she needs 6). I am worried that the treatment is going to take her. She had a clear PET scan after the second treatment so her cancer responded very well. I feel That she needs a month break or something to regain some strength. was curious if anyone has had to take more time in between treatments or even not finish all 6. I'm worried I will lose my mom to these treatments vs the cancer. I would appreciate any experiences or advice.

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Mom

    Marie,

    I'm quite sorry about your mom's weakness . Weight loss and weakness are the norms for anyone on chemo (not universal, but more common than not), but the drugs are frequently harder on the elderly.  Ideally, chemo cycles are best administered as scheduled, but doctors sometimes have to alter.   Ask her doctor the same questions you posed here, and tell him of your concerns.   I was 53 when I started chemo, and was overall fairly active and healthy at the time, but by around my fourth cycle was sleeping 18 hours a day, and could hardly walk at times.

    All patients on chemo are carefully monitored via blood testing to check their general health. Ask about her CBC results, and whether there are any serious issues.  Anemia and dehydration are two of the most common causes of brief delays in treatment. Drug-induced anorexia (no appetite, refusing to eat) is not unusual.  In these cases it is very important to get the patient to eat whatever they will eat.  Some, like me, can take nothing but breakfast drinks for periods of time.  And, some patients do get too weak to live alone, and some even require inpatient care.  I would ask if she is approaching that necessity.   There are cases that are just too trying for the patient to reasonably endure, but is sounds like her doctors are aiming for what they term curative effect, or killing all of the disease. In other words, going in , their assessment was/is that she can get through this.  I wish you and her both well and success.

    So, basically, I think you need to have a detailed consultation with her oncologist. 

     

    max

  • lindary
    lindary Member Posts: 711 Member

    Mom

    Marie,

    I'm quite sorry about your mom's weakness . Weight loss and weakness are the norms for anyone on chemo (not universal, but more common than not), but the drugs are frequently harder on the elderly.  Ideally, chemo cycles are best administered as scheduled, but doctors sometimes have to alter.   Ask her doctor the same questions you posed here, and tell him of your concerns.   I was 53 when I started chemo, and was overall fairly active and healthy at the time, but by around my fourth cycle was sleeping 18 hours a day, and could hardly walk at times.

    All patients on chemo are carefully monitored via blood testing to check their general health. Ask about her CBC results, and whether there are any serious issues.  Anemia and dehydration are two of the most common causes of brief delays in treatment. Drug-induced anorexia (no appetite, refusing to eat) is not unusual.  In these cases it is very important to get the patient to eat whatever they will eat.  Some, like me, can take nothing but breakfast drinks for periods of time.  And, some patients do get too weak to live alone, and some even require inpatient care.  I would ask if she is approaching that necessity.   There are cases that are just too trying for the patient to reasonably endure, but is sounds like her doctors are aiming for what they term curative effect, or killing all of the disease. In other words, going in , their assessment was/is that she can get through this.  I wish you and her both well and success.

    So, basically, I think you need to have a detailed consultation with her oncologist. 

     

    max

    Water

    Once I was diagnosed I was told my a couple of cancer surviors - water, water, water. With your mom's age water is even more important. The older a person is the easier it is for them to get dehydrated. (I learned then when my mom in her mid-80s and having problems with her memory.) So you have to make sure she is drinking a lot of water. I've been doing 2 liters a day right after chemo. I also make sure I have yogurt (for me Yoplait chocolate whip), V-8, a nutritional drink and a protein drink (one low on sugar) ever day and not all at one time. My appetite has been ok but there are times I don't feel like eating and I figure this covers it. Usually it is not all day. 

    I do know from my onw experience that they do not like to wait more than 6 weeks between treatments. I think they fer the cancer will become resistant to it during that time. Your mom's oncologist is the only one who can say how long she wait between the treatments. 

  • Don2088
    Don2088 Member Posts: 16
    lindary said:

    Water

    Once I was diagnosed I was told my a couple of cancer surviors - water, water, water. With your mom's age water is even more important. The older a person is the easier it is for them to get dehydrated. (I learned then when my mom in her mid-80s and having problems with her memory.) So you have to make sure she is drinking a lot of water. I've been doing 2 liters a day right after chemo. I also make sure I have yogurt (for me Yoplait chocolate whip), V-8, a nutritional drink and a protein drink (one low on sugar) ever day and not all at one time. My appetite has been ok but there are times I don't feel like eating and I figure this covers it. Usually it is not all day. 

    I do know from my onw experience that they do not like to wait more than 6 weeks between treatments. I think they fer the cancer will become resistant to it during that time. Your mom's oncologist is the only one who can say how long she wait between the treatments. 

    I agree 100%. Hydration makes

    I agree 100%. Hydration makes a huge difference. I am being treated for NLPHL. I was plugging along taking Neulasta with each R-CHOP treatment. I was struggling a lot with the bone pain from the Neulasta. I skipped the Neulasta after treatment 4 of 6. I thought I was going to die. The side effects from the Neulasta pales in comparison to suffering from low white cell counts. If your Dr doesn't have you on Neulasta, ask about it.

  • Simon24
    Simon24 Member Posts: 45
    Neulasta

    Neulasta is very helpful.  My husband takes an extra strength Tylenol one hour before the Neulasta shot and he has not had any bone pain after four rounds of R-CHOP and four shots of Neulasta.  He gets his Neulasta shot 24 hours after chemo.  One time he couldn't schedule the Neulasta 24 hours afterwards so they sent him home with a Neulasta injector which worked very well although it was strange to see a blinking green light under his shirt.  Weight loss is a real struggle.  The American Cancer Society has a good book "What to Eat During Cancer Treatment."  We really like the recipes and they are broken down according to symptom:  Nausea, Diarrhea, Constipation, Sore Mouth and Difficulty Swallowing, Taste Alterations, and Unintentional Weigh Loss.  My husband has totally developed a dislike of bread during chemo.  His sense of taste has changed greatly.  I made the mini pot pie recipe tonight and he ate every bit of it. He also likes sherbet and their is a great sherbet shake recipe in the book.  I use whole milk.  We used to drink skim, but at this point I think he needs the extra calories.  Is your Mom drinking Boost, Ensure Plus, or Carnation instant breakfast?  They all add calories and extra nutrition.  My husband's doctor said that he might be able to reduce the amount of the chemo during the last two treatments if his PET scan was clear.  It was greatly improved, but not totally clear so I don't think he will reduce the amount of chemo for rounds five and six.  Since your Mom's chemo was clear after round two maybe the doctor will consider reducing the amount of chemo during her next treatment.  Wishing you and your Mom well.      Simone

  • lindary
    lindary Member Posts: 711 Member
    Simon24 said:

    Neulasta

    Neulasta is very helpful.  My husband takes an extra strength Tylenol one hour before the Neulasta shot and he has not had any bone pain after four rounds of R-CHOP and four shots of Neulasta.  He gets his Neulasta shot 24 hours after chemo.  One time he couldn't schedule the Neulasta 24 hours afterwards so they sent him home with a Neulasta injector which worked very well although it was strange to see a blinking green light under his shirt.  Weight loss is a real struggle.  The American Cancer Society has a good book "What to Eat During Cancer Treatment."  We really like the recipes and they are broken down according to symptom:  Nausea, Diarrhea, Constipation, Sore Mouth and Difficulty Swallowing, Taste Alterations, and Unintentional Weigh Loss.  My husband has totally developed a dislike of bread during chemo.  His sense of taste has changed greatly.  I made the mini pot pie recipe tonight and he ate every bit of it. He also likes sherbet and their is a great sherbet shake recipe in the book.  I use whole milk.  We used to drink skim, but at this point I think he needs the extra calories.  Is your Mom drinking Boost, Ensure Plus, or Carnation instant breakfast?  They all add calories and extra nutrition.  My husband's doctor said that he might be able to reduce the amount of the chemo during the last two treatments if his PET scan was clear.  It was greatly improved, but not totally clear so I don't think he will reduce the amount of chemo for rounds five and six.  Since your Mom's chemo was clear after round two maybe the doctor will consider reducing the amount of chemo during her next treatment.  Wishing you and your Mom well.      Simone

    Neulasta

    I've been lucky in that I've not had any side effects from the Neulasta. It really has helped get those white cells up. So far few side effects from the chemo itself but I am facing the big sutff soon, 6 days of high doesage chemo before stem cell. See how well I do then.

    I have been drinking nutritional drink every day. I've never been a big eater and with the effect of the chemo I figure it wouldn't hurt. I also drink a small can of V-8 each day too. I've had some weight loss but I tried to keep to to about 5 lbs each chemo cycle but never more than 10. My eating comes and goes. Some things bother me when they taste odd, like Italan food. Other things like mac & cheese always tast good. I have also gone to whole milk because of the nutrition.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Simon24 said:

    Neulasta

    Neulasta is very helpful.  My husband takes an extra strength Tylenol one hour before the Neulasta shot and he has not had any bone pain after four rounds of R-CHOP and four shots of Neulasta.  He gets his Neulasta shot 24 hours after chemo.  One time he couldn't schedule the Neulasta 24 hours afterwards so they sent him home with a Neulasta injector which worked very well although it was strange to see a blinking green light under his shirt.  Weight loss is a real struggle.  The American Cancer Society has a good book "What to Eat During Cancer Treatment."  We really like the recipes and they are broken down according to symptom:  Nausea, Diarrhea, Constipation, Sore Mouth and Difficulty Swallowing, Taste Alterations, and Unintentional Weigh Loss.  My husband has totally developed a dislike of bread during chemo.  His sense of taste has changed greatly.  I made the mini pot pie recipe tonight and he ate every bit of it. He also likes sherbet and their is a great sherbet shake recipe in the book.  I use whole milk.  We used to drink skim, but at this point I think he needs the extra calories.  Is your Mom drinking Boost, Ensure Plus, or Carnation instant breakfast?  They all add calories and extra nutrition.  My husband's doctor said that he might be able to reduce the amount of the chemo during the last two treatments if his PET scan was clear.  It was greatly improved, but not totally clear so I don't think he will reduce the amount of chemo for rounds five and six.  Since your Mom's chemo was clear after round two maybe the doctor will consider reducing the amount of chemo during her next treatment.  Wishing you and your Mom well.      Simone

    Memories

    Simone,

    So much of what you wrote here reminds me of my own experience during six months of r-abvd.  Like many people, I got "food fetishes" and strong adversions to various things. I did not get "metal mouth." Rather, my mouth seemed full of salt all the time.  One day I sipped a glass of clean tap water, and my mouth seemed full of blood. I spat it out, and there was no blood at all present. Just one of those odd things. Fortunately, that did not reoccur.   For a few months all I really wanted was french fries, but could tolelrate a few other food items.  And, for a while, breakfast drinks were the bulk of my daily diet.  I did the Carnation Instant Breakfast and Ensure diet for at least a few weeks, although still eating some solid food daily.

    I lost 15% if my body weight, but the doctor never lowered my chemo dosing. I ended up with 140% of the lifetime recommended Adriamycin ("Red Devil") total, but the oncologist said "We need to hit this hard until the end."  Of course, the FDA authorizes oncologists to make these decisions as they see fit for the welfare of the patient. 

    Neulasta worked well for me, but following the first dose, I was cut back to a half dose, due to severe pain.  Bone pain from Neulasta is mostly linked to arthritis in the patient, and since I had 18 fractures from trauma years earlier (including a broken back and two collapsed disks), I was a logical candidate for this painful reaction. The half dose worked well for me, and my WBC count at all times during treatment reamained in the normal range, or even a little above normal.

    I had the syndrom termed "Flu-Like Symptoms" for almost the whole six months (severe muscle pain, as if suffering from the flu), and for pain had to take several Loritabs daily, but that worked pretty well for me also.

    Flu-Like Syndrom: http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

    I wish your husband a full recovery.  Appetite, like hair, returns to normal fairly rapidly after chemo cessation in virtually all patients.

     

    max

     

  • Simon24
    Simon24 Member Posts: 45

    Memories

    Simone,

    So much of what you wrote here reminds me of my own experience during six months of r-abvd.  Like many people, I got "food fetishes" and strong adversions to various things. I did not get "metal mouth." Rather, my mouth seemed full of salt all the time.  One day I sipped a glass of clean tap water, and my mouth seemed full of blood. I spat it out, and there was no blood at all present. Just one of those odd things. Fortunately, that did not reoccur.   For a few months all I really wanted was french fries, but could tolelrate a few other food items.  And, for a while, breakfast drinks were the bulk of my daily diet.  I did the Carnation Instant Breakfast and Ensure diet for at least a few weeks, although still eating some solid food daily.

    I lost 15% if my body weight, but the doctor never lowered my chemo dosing. I ended up with 140% of the lifetime recommended Adriamycin ("Red Devil") total, but the oncologist said "We need to hit this hard until the end."  Of course, the FDA authorizes oncologists to make these decisions as they see fit for the welfare of the patient. 

    Neulasta worked well for me, but following the first dose, I was cut back to a half dose, due to severe pain.  Bone pain from Neulasta is mostly linked to arthritis in the patient, and since I had 18 fractures from trauma years earlier (including a broken back and two collapsed disks), I was a logical candidate for this painful reaction. The half dose worked well for me, and my WBC count at all times during treatment reamained in the normal range, or even a little above normal.

    I had the syndrom termed "Flu-Like Symptoms" for almost the whole six months (severe muscle pain, as if suffering from the flu), and for pain had to take several Loritabs daily, but that worked pretty well for me also.

    Flu-Like Syndrom: http://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

    I wish your husband a full recovery.  Appetite, like hair, returns to normal fairly rapidly after chemo cessation in virtually all patients.

     

    max

     

    Thank you for sharing

    Thank you for sharing your experiences with changes in appetite during chemo. A lot of people tell me about metal mouth, but my husband has not experienced that at all.  He has had experiences more like what you have described, but without the taste of blood.  That must have been awful for you.  He just had his intrathecal (spinal chemo) on Thursday and is going to have the R-CHOP on Nov. 4 so with all these chemo treatments it is no wonder he doesn't feel like eating.  I am willing to make him any food that he likes as long as he eats.  Thank you for the good wishes.  I wish you continued good health.             Simone

     

    By the way, I have tried to fill in the "About Me" page about ten times and for whatever reason it will not save the information I include except for the last paragraph.  It is very strange.  I have tried to get help with this, but so far haven't been able to update the page.  He has Diffuse Large B Cell NHL. 

  • csn_jeff
    csn_jeff moderator Posts: 22
    Simon24 said:

    Thank you for sharing

    Thank you for sharing your experiences with changes in appetite during chemo. A lot of people tell me about metal mouth, but my husband has not experienced that at all.  He has had experiences more like what you have described, but without the taste of blood.  That must have been awful for you.  He just had his intrathecal (spinal chemo) on Thursday and is going to have the R-CHOP on Nov. 4 so with all these chemo treatments it is no wonder he doesn't feel like eating.  I am willing to make him any food that he likes as long as he eats.  Thank you for the good wishes.  I wish you continued good health.             Simone

     

    By the way, I have tried to fill in the "About Me" page about ten times and for whatever reason it will not save the information I include except for the last paragraph.  It is very strange.  I have tried to get help with this, but so far haven't been able to update the page.  He has Diffuse Large B Cell NHL. 

    About me page

    Hello Judy,

    I am sorry you are having trouble updating your "About Me" page. If you would like, you can email us the information you would like to include and we can add it.

    Best regards,

    Jeff

    CSN Support Team

     

  • Simon24
    Simon24 Member Posts: 45
    csn_jeff said:

    About me page

    Hello Judy,

    I am sorry you are having trouble updating your "About Me" page. If you would like, you can email us the information you would like to include and we can add it.

    Best regards,

    Jeff

    CSN Support Team

     

    Thank you

    Thank you.  As soon as I can get something together I will try emailing it.    Simone