Husband with hodgkins

Hello,

I am new to this discussion. My Husband was diagnosed with Hodgkins Lymphoma In October of 2016. Dr gave a good prognosis, and Lymphoma is curable, but that is down the road. Getting through the treatment is quite an experience.

He is approaching his 6th chemo treatment coming up on Jan 9,  2017. Regimen is set for 12 treatments..

I am at a crossroads, as I am trying to help him battle the chemo side effects, although feeling so helpless and scared at the same time, but trying to keep up a strong front.

He is fatiqued, and does not want to eat much, due to the taste bud issues that go along with Chemo. He does well with soups, shakes, smoothies. boost, ensure.etc.

I offer different things for him to eat/drink, however I want him to eat more, because we do not want to lose any more weight!

He has lost abound 20lbs since the beginning, and has 6 more treatments....

 

Bottom line is I feel so very bad for him, and he is a very postive person normally, so he  gets up every day and goes to work, even it is a half day,

then comes home and is just exhausted..

I don't want to be a nagging wife, and irritate him with questions about how he is feeling, or if I can get him a drink or food.

 

thank you for listening.

tammy k.

 

 

 

 

«134

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    edited January 2017 #2
    A blessing to him

    Tammy, you are obviously a blessing to your husband.  Your worry is unavoidable.

    It sounds like he is on ABVD, which is what I took (the 12 infusions and the fact that he has HL is what makes me think this).  Anorexia, or adversion to eating is common after numerous infusions have been applied. I stopped eating anyting and had to live on Ensure, or other breakfast drinks for the last few months.

    Get whatever nutrition in him you can; any calories are better than none.  He might develope food fetishes, or cravings for odd foods, almost like a pregnant woman will experience. Feed him what he likes at those times. The anorexia is due to the drugs, not the disease. When he ends chemo, his appetite will return over time. Mention his weight to his doctor, but what you are experiencing is common on ABVD (when given over long-term), and should not damage his health after he recovers.

    max

  • tambrak
    tambrak Member Posts: 29

    A blessing to him

    Tammy, you are obviously a blessing to your husband.  Your worry is unavoidable.

    It sounds like he is on ABVD, which is what I took (the 12 infusions and the fact that he has HL is what makes me think this).  Anorexia, or adversion to eating is common after numerous infusions have been applied. I stopped eating anyting and had to live on Ensure, or other breakfast drinks for the last few months.

    Get whatever nutrition in him you can; any calories are better than none.  He might develope food fetishes, or cravings for odd foods, almost like a pregnant woman will experience. Feed him what he likes at those times. The anorexia is due to the drugs, not the disease. When he ends chemo, his appetite will return over time. Mention his weight to his doctor, but what you are experiencing is common on ABVD (when given over long-term), and should not damage his health after he recovers.

    max

    Thank you so much for your

    Thank you so much for your response Max. I hope your are doing well after your treatment.

    Yes he is on ABVD, however the Bleo  (B) was dropped from his meds last session, as the doc felt it was not necessary for him, since his latest lung testing was good.

  • Hodgkinninja
    Hodgkinninja Member Posts: 14
    Just have him eat whatever he

    Just have him eat whatever he will eat when he is craving....I had weird   food fetishes and I we I got those craving I went town.   Depending on what state you are in you might have success with cannabis to increase appetite.

  • tambrak
    tambrak Member Posts: 29
    thank you for responding..

    thank you for responding..

    Just a worry, but we will get thru this, as we are not gonna let this kick our butts!

     

    just heartbroken for my husband, is is such strong, positive and giving person, to be dwindling away with chemo symptoms

    and feeling crummy...=-(

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    tambrak said:

    thank you for responding..

    thank you for responding..

    Just a worry, but we will get thru this, as we are not gonna let this kick our butts!

     

    just heartbroken for my husband, is is such strong, positive and giving person, to be dwindling away with chemo symptoms

    and feeling crummy...=-(

    Your husband will rebound: Let that be your primary viewpoint.  HL is usually beatable, and ABVD is very effective, but harsh while taking.  I developed pulmanory problems while on it, but my hematologist said it was not from the Bleomycin, and had me finish it full-strength, but it is a potential danger to the lungs.

    You asked above:  I am lymphoma-free today, six years later.  In six years, he will be lymphoma-free also.  I looked horrible at the end of treatment, but rebound will begin to occur rapidly.  Side-effects may linger up to a year: Weakness, mental confusion, and the others.

    max

  • tambrak
    tambrak Member Posts: 29
    edited January 2017 #7

    Your husband will rebound: Let that be your primary viewpoint.  HL is usually beatable, and ABVD is very effective, but harsh while taking.  I developed pulmanory problems while on it, but my hematologist said it was not from the Bleomycin, and had me finish it full-strength, but it is a potential danger to the lungs.

    You asked above:  I am lymphoma-free today, six years later.  In six years, he will be lymphoma-free also.  I looked horrible at the end of treatment, but rebound will begin to occur rapidly.  Side-effects may linger up to a year: Weakness, mental confusion, and the others.

    max

    thank you Max, you have been

    thank you Max, you have been most encourging..Laughing

     

     

     

  • tambrak
    tambrak Member Posts: 29
    edited January 2017 #8
    PET is scheduled!

    After 6 abvd treatments, my husbands Pet is scheduled for next week.

    Fingers and toes crossed for positive news.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Tape

    tammy,

    I had trouble keeping my toes crossed -- as a southerner, decided to use duct tape on them !

    Kidding, but wishing you both well, and a clean PET: NED, CR, all the "good" alphabet arrangements

    max

  • MrsF
    MrsF Member Posts: 6
    edited January 2017 #10
    Same Boat

    Hi Tammy,

    Boy can I relate to what you are going thru! My husband was diagnosed with NHL in November. His first treatment was the week after Christmas and all seemed to have gone well, at least he didn't have any of the possible side effects during treatment (he is on RCHOP). Last week we went in for his 2nd treatment, he is supposed to have 6- 3 weeks apart, and he had a temp of 100.3 so they did not want to treat. We are rescheduled for tomorrow but he has been getting temps every day for the last week so not sure what will happen tomorrow. I've called twice to talk to the nurses. they say if the Doc determines it is "tumor Fever" he may just put him thru treatment anyhow. If it's from the treatment we will have to make some adjustments (there are no other symptoms to indicate infection so they feel its just Tumor Fever).

    Of course my husband is discouraged by this set back. His appetite is also off because nothing tastes good. I keep buying different things that I think might interest him but hard to find things he likes. He has lost quite a bit of weight; fortunately he had some to lose but at this point we don't want him losing much more. Its a daily struggle trying to make sure he's fed, comfortable, how high is his temp? is anything else going on I should know about...I too feel like I'm badgering sometimes.

    Tammy, it is good to know someone else is going thru the same thing. I feel like I am grosely under-trained for this job I find myself in right now. We never even had kids so I don't even have the mother instinct going for me!

    I wish you both well and much success with treatments and recovery <3

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Commonalities

    Welcome to you, Mrs F

    Your husband's fever is very possibly neutropenia, a routine side-effect of many chemo drugs; it causes certain forms of white blood cells to drop below normal range, and induces fever. I was hospitalized for a weekend with neutropenia after my first infusion.   Neutropenia is ordinarily controlled with a shot of a drug called neulasta or similiar drugs, within 48 hours after an infusion ends.  I would ask the oncologist about both neutropenia and whether or not he is getting neulasta (most R-CHOP patients do receive it).  Many oncologist's refer to 'neutropenia' with the layman's term 'tumor fever.'

    Rituxan (the 'R' drug in R-CHOP) also routinely causes fever and chills, but the chills are usually of short duration.

    Loss of taste and eventual aneroxia are common, but apppetiete and normal taste return with in a month or so after chemo ends for almost all patients. Get him to eat and drink what he will, but I went on Ensure for about two months during my six months on R-ABVD, which is a combination used against HL.

    I would ask the oncologist about neutropenia, and if he is getting neulasta.

    I have always said: My cancers were harder for my wife than they were for me.  Although I was in pain and miserable, she had to do so much more than I did during that difficult period.  But his treatment period will end faster than you can imagine.

    max

    neutropenia: https://en.wikipedia.org/wiki/Neutropenia

    Rituxan: http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

  • MrsF
    MrsF Member Posts: 6
    edited January 2017 #12
    "tumor fever"

    Max, thank you for the information!

    I have seen the commercials for Neulasta, never realized what it was actually treating. I have also heard of neutropenia and never realized that is what "tumor fever" is. I am armed with some knowlege and questions for our appointment tomorrow thanks to you! Hopefully it won't be postponed due to the weather.

  • lindary
    lindary Member Posts: 711 Member
    edited January 2017 #13
    MrsF said:

    Same Boat

    Hi Tammy,

    Boy can I relate to what you are going thru! My husband was diagnosed with NHL in November. His first treatment was the week after Christmas and all seemed to have gone well, at least he didn't have any of the possible side effects during treatment (he is on RCHOP). Last week we went in for his 2nd treatment, he is supposed to have 6- 3 weeks apart, and he had a temp of 100.3 so they did not want to treat. We are rescheduled for tomorrow but he has been getting temps every day for the last week so not sure what will happen tomorrow. I've called twice to talk to the nurses. they say if the Doc determines it is "tumor Fever" he may just put him thru treatment anyhow. If it's from the treatment we will have to make some adjustments (there are no other symptoms to indicate infection so they feel its just Tumor Fever).

    Of course my husband is discouraged by this set back. His appetite is also off because nothing tastes good. I keep buying different things that I think might interest him but hard to find things he likes. He has lost quite a bit of weight; fortunately he had some to lose but at this point we don't want him losing much more. Its a daily struggle trying to make sure he's fed, comfortable, how high is his temp? is anything else going on I should know about...I too feel like I'm badgering sometimes.

    Tammy, it is good to know someone else is going thru the same thing. I feel like I am grosely under-trained for this job I find myself in right now. We never even had kids so I don't even have the mother instinct going for me!

    I wish you both well and much success with treatments and recovery <3

     

     

    appetite

    MrdF,

    When going through chemo forget what food should tastes likes. If her husband loves the taste of certain foods I am not surprised that he has toruble wanting to eat. 

    Over 30 years ago a guy I knew was going through cancer treatment (don't remember what kidn of cancer) and he decided that his goal every day was to eat. He felt that if he start losing wieght he was going to die. He survived and also gained weight during treatment. Since then I've known many who have had various types of cancer, each with their own situtation.

    When I was diagnosed I knew I needed to make sure I ate. I also knew I was enough overweight that if I lost even 50 pounds I would still have room to lose more.  So I told myself that as long as I didn't lose more than 5 lbs in a week, I was ok. I made a list in my mind of things I would try to have every day, regardless of taste. (I modified that later to skip food if the taste was bad instead of flat.) 

    I won't go into what ended up on that list but I will say that I had a surprise. I love spicy foods and the surpised was that most of the time those tastes came through. My husband was adamant about me eating healthy stuff so our compromise was his vegetable soup. I am not a big vegetable eater so I had the soup knowing it was healthy. He agreed to let me skip 1 meal a day, if I was not feeling hungry. And my go-to-food, what I would eat when I didn't want to eat at all, was mac 'n cheese. I've heard of others where french fries were their go-to food and someone else mashed potatoes. It seems the common denominator is starch.

    I will admit that I wasn't dealing with a fever and probably some other things your husband is dealing with. Just keep trying. I iwll add at this point that V-8 and nutritional drinks also helped me. Good luck to you & your husband. 

     

  • GSP2
    GSP2 Member Posts: 103 Member
    edited January 2017 #14
    tumor fever

    Pathophysiology

    This gets a little technical but neutopenia just means an abnormal total number of neutrophils.

    For adults that number is around 1500.

    Tumor fever is noninfectious fever caused by/triggered by the tumor, acts differently and responds differently than say infection related fever

    The pathophysiology of neoplastic fever is not completely understood, however, cytokines are known to be the key players. These endogenous pyrogens induce prostaglandin E2, which in turn causes hypothalamic set point surge, and fever. IL-1, TNF, IL-2, IL-6, IL-12, or interferon may be elevated with neoplasm or infection [8]. While the cause of elevated cytokines during infection is precipitated by pathogens, the trigger in cancer is unclear. One study found that activation of Il-1? was induced by mutated RAS [9]. Another possibility includes inflammation secondary to ulceration or necrosis caused by the tumor itself. A key player in this cytokine jumble is IL-6. High levels of IL-6 are seen in Hodgkin’s Lymphoma, Diffuse Large Cell Lymphoma, and CLL. IL-6 is associated with B-symptoms and has prognostic value in these three cancer types, as well as renal cell carcinoma [10, 11, 12, 13, 14]. Notably, in Diffuse-Large Cell Lymphoma, the independent factor that most correlates with complete remission and disease free survival is IL-6 serum level [15].

  • tambrak
    tambrak Member Posts: 29

    Tape

    tammy,

    I had trouble keeping my toes crossed -- as a southerner, decided to use duct tape on them !

    Kidding, but wishing you both well, and a clean PET: NED, CR, all the "good" alphabet arrangements

    max

    haha thank you Max.

    haha thank you Max.

    here in Ohio we also use alot of duct tape..lol

     

    My husbands' PET scan after 6 tx's was negative. Dr used the words 'remission' and that is exacty what they had hoped for and strived for.

    however, he has to continue with chemo, to finish scheudled 12 tx's..5 more to go!

     

    thank you so much

    Tammy

     

  • tambrak
    tambrak Member Posts: 29
    edited January 2017 #16
    MrsF said:

    Same Boat

    Hi Tammy,

    Boy can I relate to what you are going thru! My husband was diagnosed with NHL in November. His first treatment was the week after Christmas and all seemed to have gone well, at least he didn't have any of the possible side effects during treatment (he is on RCHOP). Last week we went in for his 2nd treatment, he is supposed to have 6- 3 weeks apart, and he had a temp of 100.3 so they did not want to treat. We are rescheduled for tomorrow but he has been getting temps every day for the last week so not sure what will happen tomorrow. I've called twice to talk to the nurses. they say if the Doc determines it is "tumor Fever" he may just put him thru treatment anyhow. If it's from the treatment we will have to make some adjustments (there are no other symptoms to indicate infection so they feel its just Tumor Fever).

    Of course my husband is discouraged by this set back. His appetite is also off because nothing tastes good. I keep buying different things that I think might interest him but hard to find things he likes. He has lost quite a bit of weight; fortunately he had some to lose but at this point we don't want him losing much more. Its a daily struggle trying to make sure he's fed, comfortable, how high is his temp? is anything else going on I should know about...I too feel like I'm badgering sometimes.

    Tammy, it is good to know someone else is going thru the same thing. I feel like I am grosely under-trained for this job I find myself in right now. We never even had kids so I don't even have the mother instinct going for me!

    I wish you both well and much success with treatments and recovery <3

     

     

    hi Mrsf.

    hi Mrsf.

    You are not bothering at all! Cool

    So sorry that this is what you are going thru also, although we find the strength somehow to push through don't we?

    My husbands mid treatment scan was negative, and the chemo is working! Dr. used the word, 'remission' when he called us this past Friday, with the results. We still have 5 more treatments to complete, to finish the total of 12, for his HL.

    And I do not want him to lose any more weight as you stated, but doing the best we can!

    The eating issue still is a huge problem, and I feel like I am in a test kitchen for 'chemo recipes'! We try different things to eat/drink, and feel so bad for him, because he says things either have no taste, or taste different, or feel different..etc.. And its not that he is not hungry, because he has an appetite, and that is what makes it all the more frustrating..

    Liquids, smoothies, milk shakes, boost, ensure..etc.  and lots of soups, seems to be the foods of choice lately, and I sneek in a scoop of whey protein sometimes, to boost nutrition levels. He has eaten a couple burgers from Five Guys, etc.. and says those have good taste  =-) because they are juicy, and lots of sauce, so is able to tolerate.

    The fatigue and weakness is also an issue, but my husband gets up every day, and goes to his shop (he owns a car restoration shop) and stays as long as he can, either 3 hours, 1 hour, or sometimes 5! Just depends.

    I will keep you posted, and please do the same. I check this board a few times a week, when I can.

    best regards and thoughts

    tammy

  • GSP2
    GSP2 Member Posts: 103 Member
    edited January 2017 #17
    tambrak said:

    haha thank you Max.

    haha thank you Max.

    here in Ohio we also use alot of duct tape..lol

     

    My husbands' PET scan after 6 tx's was negative. Dr used the words 'remission' and that is exacty what they had hoped for and strived for.

    however, he has to continue with chemo, to finish scheudled 12 tx's..5 more to go!

     

    thank you so much

    Tammy

     

    exciting news

    Thank you for posting this

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    MrsF said:

    "tumor fever"

    Max, thank you for the information!

    I have seen the commercials for Neulasta, never realized what it was actually treating. I have also heard of neutropenia and never realized that is what "tumor fever" is. I am armed with some knowlege and questions for our appointment tomorrow thanks to you! Hopefully it won't be postponed due to the weather.

    Info Sources

    Mrs,

    The link above to Rituxan is from chemocare.com  - a great source for every FDA-Approved chemo drug in the US.  Anytime you have a question about anything Mr.F receives, you can get a good overview there.  It also has articles relating to side-effects and conditions, such as his taste issues, and all other routine problems.

    For more technical stuff, the journal Blood is probably the best professional publication for blood-cancers in America.

    http://www.bloodjournal.org/?sso-checked=true

    max

  • MrsF
    MrsF Member Posts: 6
    lindary said:

    appetite

    MrdF,

    When going through chemo forget what food should tastes likes. If her husband loves the taste of certain foods I am not surprised that he has toruble wanting to eat. 

    Over 30 years ago a guy I knew was going through cancer treatment (don't remember what kidn of cancer) and he decided that his goal every day was to eat. He felt that if he start losing wieght he was going to die. He survived and also gained weight during treatment. Since then I've known many who have had various types of cancer, each with their own situtation.

    When I was diagnosed I knew I needed to make sure I ate. I also knew I was enough overweight that if I lost even 50 pounds I would still have room to lose more.  So I told myself that as long as I didn't lose more than 5 lbs in a week, I was ok. I made a list in my mind of things I would try to have every day, regardless of taste. (I modified that later to skip food if the taste was bad instead of flat.) 

    I won't go into what ended up on that list but I will say that I had a surprise. I love spicy foods and the surpised was that most of the time those tastes came through. My husband was adamant about me eating healthy stuff so our compromise was his vegetable soup. I am not a big vegetable eater so I had the soup knowing it was healthy. He agreed to let me skip 1 meal a day, if I was not feeling hungry. And my go-to-food, what I would eat when I didn't want to eat at all, was mac 'n cheese. I've heard of others where french fries were their go-to food and someone else mashed potatoes. It seems the common denominator is starch.

    I will admit that I wasn't dealing with a fever and probably some other things your husband is dealing with. Just keep trying. I iwll add at this point that V-8 and nutritional drinks also helped me. Good luck to you & your husband. 

     

    appetite

    Lindary,

    Thank you for your insight! It has been a challenge trying to find food he likes. To make matters worse a couple of weeks ago he had a "stomach thing" going on that he felt was brought on by dairy. He has never been lactose intolerant but both his sister and brother are so he made the correlation when his gut started acting up. The doctor told him it could have just been a bit of the stomach bug that has been going around everywhere but he is reluctant to put dairy back into his diet. So now I am also trying to find things he likes that are dairy free. Not the easiest job. 

    I too was trying to use spices to make things have more flavor for him but he says the spices don't set well with him, sweet seems to work better. So, a couple of nights it was pancakes for dinner! He does like fruit, fruit cups are a go to. I did have him drinking Boost and Ensure before the whole stomach thing so now I don't know what to do, they all seem to have a dairy base to them. Maybe the V8 is an option, they have different fruit flavors that might work!

    If we can just get rid of the fever and get back on the treatment path I think we will be doing a lot better also!

     

     

  • MrsF
    MrsF Member Posts: 6
    tambrak said:

    hi Mrsf.

    hi Mrsf.

    You are not bothering at all! Cool

    So sorry that this is what you are going thru also, although we find the strength somehow to push through don't we?

    My husbands mid treatment scan was negative, and the chemo is working! Dr. used the word, 'remission' when he called us this past Friday, with the results. We still have 5 more treatments to complete, to finish the total of 12, for his HL.

    And I do not want him to lose any more weight as you stated, but doing the best we can!

    The eating issue still is a huge problem, and I feel like I am in a test kitchen for 'chemo recipes'! We try different things to eat/drink, and feel so bad for him, because he says things either have no taste, or taste different, or feel different..etc.. And its not that he is not hungry, because he has an appetite, and that is what makes it all the more frustrating..

    Liquids, smoothies, milk shakes, boost, ensure..etc.  and lots of soups, seems to be the foods of choice lately, and I sneek in a scoop of whey protein sometimes, to boost nutrition levels. He has eaten a couple burgers from Five Guys, etc.. and says those have good taste  =-) because they are juicy, and lots of sauce, so is able to tolerate.

    The fatigue and weakness is also an issue, but my husband gets up every day, and goes to his shop (he owns a car restoration shop) and stays as long as he can, either 3 hours, 1 hour, or sometimes 5! Just depends.

    I will keep you posted, and please do the same. I check this board a few times a week, when I can.

    best regards and thoughts

    tammy

    Congratulations!

    I'm so happy for you and your husband for the negative scan Smile That does make all the rest a bit more bearable!

    My husband has only had 1 treatment so far and the doctor could tell that it had already shrunk the tumor and the severe pain he was in prior to treatment had gone away! Unfortunately last week was supposed to be his 2nd treatment that was postponed for fever and yesterday we were to try again but still the fevers. The doctor does not feel it is tumor fever, he thinks that would have come on sooner after the treatment. So, he has run all kinds of tests to see if something else is going on; blood culture, urinalysis, x-ray, ultrasound. We hope to have some of the results tomorrow. Just hoping there is not something more serious than what we are already dealing with. 

    If we can just get rid of the fevers and get him back on treatment I think the appetite part will be a bit easier. If nothing else he is on prednison for 5 days after treatment which naturally increases appetite!

    I hope all continues to go well for you and your husband with the rest of his treatments.

  • Sal0101
    Sal0101 Member Posts: 136 Member
    MrsF said:

    Congratulations!

    I'm so happy for you and your husband for the negative scan Smile That does make all the rest a bit more bearable!

    My husband has only had 1 treatment so far and the doctor could tell that it had already shrunk the tumor and the severe pain he was in prior to treatment had gone away! Unfortunately last week was supposed to be his 2nd treatment that was postponed for fever and yesterday we were to try again but still the fevers. The doctor does not feel it is tumor fever, he thinks that would have come on sooner after the treatment. So, he has run all kinds of tests to see if something else is going on; blood culture, urinalysis, x-ray, ultrasound. We hope to have some of the results tomorrow. Just hoping there is not something more serious than what we are already dealing with. 

    If we can just get rid of the fevers and get him back on treatment I think the appetite part will be a bit easier. If nothing else he is on prednison for 5 days after treatment which naturally increases appetite!

    I hope all continues to go well for you and your husband with the rest of his treatments.

    appetite

    I've gone through 3 chemo's, and several fevers. The 3rd chemo was BEAM before my stem cell transplant.  That one was the one that caused me to lose my appetite! I didn't think it would ever happen!  I loved all food! I even loved ice water! Spicy, sweet, sour, crunchy, warm bread with butter, everything!  But it happened!  I was full after 2 bites of anything,  nothing appealed to me and water tasted like metal! What was it that I ordered in the hospital and eventually had for every meal just so I ate?  Kelloggs Sugar Frosted Flakes and milk!  I ate and that's all they cared about! 

    No worries!  4 months after the SCT, I am back to loving all foods! 

    lesson learned...eat what you want regardless of what time of the day it is! 

    Sharon