Husband Just Diagnosed- Stage 3

Shayfey
Shayfey Member Posts: 10

Hi everyone,

My husband and I are both 29-years-old and 3 weeks ago he was diagnosed with Hodgkin Lymphoma. They just confirmed he is stage 3 after the bone marrow biopsy came back negative (thank goodness!). This has hit us like a ton of bricks. My husband overall is a healthy young guy. He has had no symptoms. His masseuse found a lump in his neck in early January and he went to the doctor right away. A month later, after Xrays, CTs, Pet scans and blood tests, they confirmed the diagnosis. So what do we do now...

From reading others submissions I see that I am not alone in this. It is SCARY the first 3 weeks. Just the pure exhaustion you feel from going to 15 appointments/consultations/tests, to the emotional processing, to calling and telling family and friends...and on top of that I've still been going to work. All of this and he hasn't even started treatment. There's no handbook to tell you what to do in the first month, so I've been winging it. I started a binder for him (I highly recommend doing that!) to stay organized with doctors, locations, phone numbers and appointment times. Getting through the first few weeks is harrowing-- especially when you're just so darn confused on how your spouse even got this, seemingly out of nowhere! My husband has been very strong, very calm and staying positive for the both of us. I'm the one who is an emotional wreck. You feel like you should receive a medal just for making it through the work day without having an emotional breakdown. 

We've learned that he will be on the AVBD treatment for 6 months. At the 3-month mark the oncologist said they will take more scans to see if the cancer has gone down or even disappeared --and then an additional 3 months to make sure. I feel like now that we're ready for treatment we will be able to get into a routine. Once very two weeks, then also in for blood tests. Researching chemo side effects--short and long term--is not easy."Everybody's different" they say. He may have little to no side effects--he may be the small percentage that gets hit with everything. The unknown is what keeps me up at night.

They also say to the caregivers, do not try to do this alone. Now, my personality is borderline OCD, very organized, into planning, I want things to be the way I like them. Asking for help is difficult. Fortunately we do have my husband's parents about 45 minutes away, and I've already been trading off with them for appointments and surgeries. This whole situation is really forcing me to let go of control. As much as I want to be there for everything, I know I can't be. But it's a sensitive subject. My in-laws told him, "We know she needs to keep working, so we'll take you to whatever you need and be there." A nice getsure, they are just trying to help--but I took this extremely personally. I DON'T want to be at work--I know I have to for our insurance and to continue making money. But I also have this selfishness of "I'm the wife" and I should be doing more, going to more, etc. But I can't look at it that way. I need to be grateful we even have family around to help. You will get burnt out. There will be times you can't be there. Take the help.

I wonder if anyone else is going through something similar. If you have been through this as the spouse, I'd love your input and advice as we go into the long journey of treatment. I'm trying to take it one day at a time, but each day brings new information, new emotions and new fears. It's hard to not think about what could happen, and there's a point where you have to be realistic along with your optimism. I'm trying to find a steady balance of both.

Good luck to everyone and their loved ones going through this. 

 

«1

Comments

  • Simon24
    Simon24 Member Posts: 45
    edited March 2017 #2
    Take One Step at a Time

    You are right about a cancer diagnosis being scary.  My husband was diagnosed with stage 4 NHL in the summer of 2015. He also had Lyme's disease at the same time and it further complicated things.  You are right about all the running around for doctors appointments and tests being exhausting.  We tried to stay positive and look at each doctors visit, test, etc.  as being a step closer to treatment and hopefully remission.   Although we are both retired, his diagnosis was shocking because he was never sick before and walked two miles a day.  He is now in remission and we are thankful.  Your organizational skills will be very helpful to both of you.  Keeping a binder is a great idea.  I kept all of my husband's medical information in one folder and also recorded information in journal form on my computer after every doctor's visit.  I always ask for a copy of his bloodwork after every appointment and that goes in the folder, too.  Ask your oncologist if he/she uses seeyourchart.com or another system where you can log on to the computer and get test results.  Seeyourchart.com is one that we use and it enables us to see all of his radiology and lab reports.  You will feel better having that information to refer to especially if you can't make an appointment or treatment with him.  My husband had RCHOP, methotrexate treatments in the spine, and radiation, so his treatments were different than your husbands, but there are other people on this discussion board who have had AVBD.  Don't hesitate to ask questions.  Everyone on this board is friendly and will answer your questions if they can.  I know how difficult it is to let other people help you.  I am like that, too.  Maybe it will help if you think of his treatment as a goal that must be accomplished as in sports.  You are like the team coach who decides who will be the best people to help to accomplish your goal, which is to get treatment for your husband.  Your husband is like the star quarterback who needs to score the touchdown (successfully finish the treatment).  No one person on the team can do everything alone.  Your in-laws are the members of the team who can help the quarterback in a number of different ways. Everyone on the team wants your husband to score the touchdown and that's the most important thing.  I can't believe I just used a sports analogy because it took my husband quite a while to explain football to me and I'm still not sure I understand it.   I will be thinking of you and wishing your husband a very successful treatment.             Best regards,  Simone

  • PBL
    PBL Member Posts: 336 Member
    Just a detail...

    Hi Shayfey,

    I will not be adding much to Simone's very thoughtful message, as I was the patient - not the caregiver - and have NHL treated with R-CHOP,  so nothing to say about ABVD. I will just reinforce what I believe you are already aware of: as Simone said, you are the main support for your husband, the one who will be coordinating things and overseeing his health on a daily basis - on top of carrying out your job duties, which is one essential way of providing that support. Your husband is lucky to have a spouse with energy and organizational skills, and you want to be able to run the distance with him, so you should accept (and even seek) all the help you can get for your - and ultimately his - sake.

    Coming to that little detail: considering your young age and the fact that chemotherapy has not yet started, the two of you may want to discuss fertility issues and possibly semen cryopreservation with his medical team - just to be on the safe side. ABVD is not supposed to be one of the worst regimens with respect to effects on fertility, but it can happen...

    Wishing you both the best of luck with your journey.

    PBL

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    On track

    Shayfey,

    Like the others, let me say I'm sorry you and your husband have the need to meet us here.  

    It will be helpful if you specfiy what form of HL he has, which will be on his biopsy report.  It will change his prognosis and treatment path a little.  But virtually all forms of HL can be taken into complete remission (CR) fairly easily, in most cases.

    I did six months of R-ABVD, the most common HL regimen, but some HL patients get the most common combination for NHL, R-CHOP ("EPOCH" is CHOP with one other drug added).  

    ABVD and CHOP  share a lot: Both have Adriamycin, and ABVD has Vinblastine, whereas CHOP has Vincristine, a virtually identical drug.  In terms of patient experience, the main difference in CHOP and ABVD is that ABVD does NOT have the steroid Prednisone, which most writers describe as a miserable experience.   But because Prednisone functions in part as a stimulant, later in treatment ABVD can leave the patient profoundly weak, and sleeping a lot is common, but not universal.  I slept about 15-17 hours a day, later in my course of treatment.  My first two months or so were no problem, then it "caught up with me," so to speak.

    All of the drugs in ABVD are IV, so it is highly recommended that he get a cathiport installed, and some treatment centers demand this for ABVD administration. A port makes infusions much easier.

    The CT at the three infusion point that you mentioned is standard fare -- a way for the oncologist to verify that things are on track. Very likely they will be.

    Regarding borderline OCD:  Cancer is its own animal, and no respecter of our desire for orderliness or predictability.   Those habits are history now.  Learn to roll with the punches.

    I have told everyone many times:  My cancer was harder on my wife that it was on me.  I basically could just sleep and lie around; she had to do everything in the household. 

    It will be a challange, but you have youth and intelligence on your side, as well as a type of cancer that is radically more curable than most.  I am guessing and averaging here, but at his Stage and age, he is probably looking at an 80% liklihood of cure (ask you oncologist for particulars, if interested).

    In comparason, some brain cancers have a 1% survivability rate, and many organ cancers, late stage, are at around 10%.   While Lymphoma is terrible, other cancers are far worse.   It's all relative....

    max

     

  • po18guy
    po18guy Member Posts: 1,297 Member
    Fight the bully

    Any type of cancer is the bully in the room. You cannot ignore it. You are peaceful by nature. You do not want to fight. But consider: if you were admiring a river from a bridge and fell in, would you just sink to the bottom and stay there? No! You FIGHT! Back to the surface and then to the shore. And, so it goes with cancer. But, some battles are quickly won, while others become a lifestyle. Listen to Max, as he has literally run the guantlet. But, he has the advantage(??? :-D) of age, in that it brings a certain degree of calm to adversity. We have both fought, and continue to fight on a daily basis. Life changes. We adapt. We are not alone.

    Do not worry about stage or marrow involvement. It is largely immaterial with lymphoma, which is a "liquid" cancer. A liquid cancer that flows in liquid (lymph and blood) - directly in the path of the chemotherapy. Your husband will do well. It is the lymphoma that is the dead man walking - it just does not know it yet. Your husband is young, strong and otherwise healthy. Huge advantages each of them, similar to having a fully charged battery. You can profitably do research into Hodgkin's now that he has a diagnosis.

    One caution: Worry is corrosive. It can also be cumulative, so it needs an outlet. Try writing your worries daily in a spiral noteboook. Each week, or every other week, go back and cross off the worries that never materialized. Not a betting man but I'll bet you cross off all of those worries - since worries are not entirely rational. We cannot avoid worry - we can only avoid dealing well with it.

    You are Superwife, but cannot fly. So, ask for help! Keep in mind also that life has not stopped - it is only changed. Set the future aside for now. All of it. Live for today, as that is all that we are granted. Heck, we don't even control that! As you go through this, care for yourself so that you may also care for him. Let others help, even though you may have to close your eyes, bite your tongue or re-do their "help." Accept what you reasonably can in the spirit in which it is offered.

    Family and friends will feel helpless to some degree, and want to "do something." If you can, simply allow them to do reasonable things and express your gratitude. Even though some help can hinder, it is still better than having no help at all. This is an opportunity for personal growth, in that you will find that letting go of the desire to control things gives you more control over yourself. And that is always good.

    As to general anxiety, what do you believe? Do you have a philosophy, belief system, coping mechanism, religion or? Time to dive into it. All of these are methods of dealing with the acute condition called life. Far better to believe in something than in nothing. I note that those who are most anxious, most panicky, in many cases simply don't know what to believe.

    Remember: One day at a time: That's how we're wired, and that is the physical world.    

     

     

     

  • Jeff148
    Jeff148 Member Posts: 184
    edited March 2017 #6
    Your on the right path.

    Asking questions is great, especially to your Dr.; and folks on this site can be helpful as well. Max and I had the same chemo which is similar to what your husband is set up for. If you click on my picture it will take you to my site with info on how to get to my blog. There you will find things I did that were helpful....using baby shampoo for soap, puting lotion on my skin twice daily, taking antacids, taking stool softners before they are needed, mouth rinses all day etc.... You and your husband will get through this. The worst thing that hurt me was getting constipated from the antinausea drugs which caused a fissure which made my life miserable for months during chemo and months after. Gross, but I wouldn't wish that on anyone. While it is not easy, he will prevail.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    edited March 2017 #7
    Jeff148 said:

    Your on the right path.

    Asking questions is great, especially to your Dr.; and folks on this site can be helpful as well. Max and I had the same chemo which is similar to what your husband is set up for. If you click on my picture it will take you to my site with info on how to get to my blog. There you will find things I did that were helpful....using baby shampoo for soap, puting lotion on my skin twice daily, taking antacids, taking stool softners before they are needed, mouth rinses all day etc.... You and your husband will get through this. The worst thing that hurt me was getting constipated from the antinausea drugs which caused a fissure which made my life miserable for months during chemo and months after. Gross, but I wouldn't wish that on anyone. While it is not easy, he will prevail.

    Must

    I'e gotta use this opportunity to give my Brother Jeff an internet hug.

    Good seeing you !

    max

  • Jeff148
    Jeff148 Member Posts: 184

    Must

    I'e gotta use this opportunity to give my Brother Jeff an internet hug.

    Good seeing you !

    max

    Back at you brother Max.

    You are amazing.

  • Shayfey
    Shayfey Member Posts: 10
    Simon24 said:

    Take One Step at a Time

    You are right about a cancer diagnosis being scary.  My husband was diagnosed with stage 4 NHL in the summer of 2015. He also had Lyme's disease at the same time and it further complicated things.  You are right about all the running around for doctors appointments and tests being exhausting.  We tried to stay positive and look at each doctors visit, test, etc.  as being a step closer to treatment and hopefully remission.   Although we are both retired, his diagnosis was shocking because he was never sick before and walked two miles a day.  He is now in remission and we are thankful.  Your organizational skills will be very helpful to both of you.  Keeping a binder is a great idea.  I kept all of my husband's medical information in one folder and also recorded information in journal form on my computer after every doctor's visit.  I always ask for a copy of his bloodwork after every appointment and that goes in the folder, too.  Ask your oncologist if he/she uses seeyourchart.com or another system where you can log on to the computer and get test results.  Seeyourchart.com is one that we use and it enables us to see all of his radiology and lab reports.  You will feel better having that information to refer to especially if you can't make an appointment or treatment with him.  My husband had RCHOP, methotrexate treatments in the spine, and radiation, so his treatments were different than your husbands, but there are other people on this discussion board who have had AVBD.  Don't hesitate to ask questions.  Everyone on this board is friendly and will answer your questions if they can.  I know how difficult it is to let other people help you.  I am like that, too.  Maybe it will help if you think of his treatment as a goal that must be accomplished as in sports.  You are like the team coach who decides who will be the best people to help to accomplish your goal, which is to get treatment for your husband.  Your husband is like the star quarterback who needs to score the touchdown (successfully finish the treatment).  No one person on the team can do everything alone.  Your in-laws are the members of the team who can help the quarterback in a number of different ways. Everyone on the team wants your husband to score the touchdown and that's the most important thing.  I can't believe I just used a sports analogy because it took my husband quite a while to explain football to me and I'm still not sure I understand it.   I will be thinking of you and wishing your husband a very successful treatment.             Best regards,  Simone

    Simone,

    Simone,

    Thank you for opening up about you and your husband's situation. I am grateful for the advice. I love the sports analogy, I grew up playing many sports, so I get it. Since I wrote this my mother-in-law has spent the night 3 times and is watching over him since he started chemo on Monday. Again--I am accepting the help, I'm glad she is there, but still hard to get used to. (Especially when I come home to find that she rewashed all my silverware by hand because they were a "little dirty" and it was too bad I had run out of bread because my husband had to use the heels. Lol--roll with the punches, right?! I'll ask the oncologist if they have an online system--that would be convenient. So glad to hear your husband is in remission. Thanks again.

  • Shayfey
    Shayfey Member Posts: 10
    edited March 2017 #10
    PBL said:

    Just a detail...

    Hi Shayfey,

    I will not be adding much to Simone's very thoughtful message, as I was the patient - not the caregiver - and have NHL treated with R-CHOP,  so nothing to say about ABVD. I will just reinforce what I believe you are already aware of: as Simone said, you are the main support for your husband, the one who will be coordinating things and overseeing his health on a daily basis - on top of carrying out your job duties, which is one essential way of providing that support. Your husband is lucky to have a spouse with energy and organizational skills, and you want to be able to run the distance with him, so you should accept (and even seek) all the help you can get for your - and ultimately his - sake.

    Coming to that little detail: considering your young age and the fact that chemotherapy has not yet started, the two of you may want to discuss fertility issues and possibly semen cryopreservation with his medical team - just to be on the safe side. ABVD is not supposed to be one of the worst regimens with respect to effects on fertility, but it can happen...

    Wishing you both the best of luck with your journey.

    PBL

    Thank you

    Thanks so much PBL-- I really appreciate your note. Fertility was one of the first things the oncologist brought up with us, as we haven't started having children yet. We took the necessary steps and have plenty of good vials waiting for us when this is over should we need to go that route. I think that's what hit us pretty hard...we've always known we wanted kids but thought we had plenty of time, never worried about this kind of stuff. We're just going to stay positive and hope for the best. But we do have a back up plan at least. I wish you well. 

  • Shayfey
    Shayfey Member Posts: 10
    edited March 2017 #11

    On track

    Shayfey,

    Like the others, let me say I'm sorry you and your husband have the need to meet us here.  

    It will be helpful if you specfiy what form of HL he has, which will be on his biopsy report.  It will change his prognosis and treatment path a little.  But virtually all forms of HL can be taken into complete remission (CR) fairly easily, in most cases.

    I did six months of R-ABVD, the most common HL regimen, but some HL patients get the most common combination for NHL, R-CHOP ("EPOCH" is CHOP with one other drug added).  

    ABVD and CHOP  share a lot: Both have Adriamycin, and ABVD has Vinblastine, whereas CHOP has Vincristine, a virtually identical drug.  In terms of patient experience, the main difference in CHOP and ABVD is that ABVD does NOT have the steroid Prednisone, which most writers describe as a miserable experience.   But because Prednisone functions in part as a stimulant, later in treatment ABVD can leave the patient profoundly weak, and sleeping a lot is common, but not universal.  I slept about 15-17 hours a day, later in my course of treatment.  My first two months or so were no problem, then it "caught up with me," so to speak.

    All of the drugs in ABVD are IV, so it is highly recommended that he get a cathiport installed, and some treatment centers demand this for ABVD administration. A port makes infusions much easier.

    The CT at the three infusion point that you mentioned is standard fare -- a way for the oncologist to verify that things are on track. Very likely they will be.

    Regarding borderline OCD:  Cancer is its own animal, and no respecter of our desire for orderliness or predictability.   Those habits are history now.  Learn to roll with the punches.

    I have told everyone many times:  My cancer was harder on my wife that it was on me.  I basically could just sleep and lie around; she had to do everything in the household. 

    It will be a challange, but you have youth and intelligence on your side, as well as a type of cancer that is radically more curable than most.  I am guessing and averaging here, but at his Stage and age, he is probably looking at an 80% liklihood of cure (ask you oncologist for particulars, if interested).

    In comparason, some brain cancers have a 1% survivability rate, and many organ cancers, late stage, are at around 10%.   While Lymphoma is terrible, other cancers are far worse.   It's all relative....

    max

     

    Thank you

    Hi  Max,

    I'm sorry to have to meet you under these conditions as well, but I am very glad I stumbled upon this discussion board. He had a port installed last week and then just started chemo on Monday 3/6. We met with the oncologist again that morning, and did ask if he could tell us what type. He said it was a classic nodular sclerosing Hodgkin Lymphoma. One of the most common types. I *think* this makes us feel a little better, because he has treated/cured so many of these cases in his career. We felt confident with the treatment he recommended for this. And as you said we have a few things on our side like age and overall health. You really do have to put things in perspective when it comes this disease. There are so many others out there fighting far worse battles; my heart goes out to those families. I'm learning to roll with the punches more and more each day. Thank you for being what looks like the Guardian of the Forum to all of us who come here, spouse or patient. As a writer and editor, I know how much weight words can hold. Coming back onto this forum a few days later and seeing all of these responses has filled me with hope and motivation. 

  • Shayfey
    Shayfey Member Posts: 10
    edited March 2017 #12
    po18guy said:

    Fight the bully

    Any type of cancer is the bully in the room. You cannot ignore it. You are peaceful by nature. You do not want to fight. But consider: if you were admiring a river from a bridge and fell in, would you just sink to the bottom and stay there? No! You FIGHT! Back to the surface and then to the shore. And, so it goes with cancer. But, some battles are quickly won, while others become a lifestyle. Listen to Max, as he has literally run the guantlet. But, he has the advantage(??? :-D) of age, in that it brings a certain degree of calm to adversity. We have both fought, and continue to fight on a daily basis. Life changes. We adapt. We are not alone.

    Do not worry about stage or marrow involvement. It is largely immaterial with lymphoma, which is a "liquid" cancer. A liquid cancer that flows in liquid (lymph and blood) - directly in the path of the chemotherapy. Your husband will do well. It is the lymphoma that is the dead man walking - it just does not know it yet. Your husband is young, strong and otherwise healthy. Huge advantages each of them, similar to having a fully charged battery. You can profitably do research into Hodgkin's now that he has a diagnosis.

    One caution: Worry is corrosive. It can also be cumulative, so it needs an outlet. Try writing your worries daily in a spiral noteboook. Each week, or every other week, go back and cross off the worries that never materialized. Not a betting man but I'll bet you cross off all of those worries - since worries are not entirely rational. We cannot avoid worry - we can only avoid dealing well with it.

    You are Superwife, but cannot fly. So, ask for help! Keep in mind also that life has not stopped - it is only changed. Set the future aside for now. All of it. Live for today, as that is all that we are granted. Heck, we don't even control that! As you go through this, care for yourself so that you may also care for him. Let others help, even though you may have to close your eyes, bite your tongue or re-do their "help." Accept what you reasonably can in the spirit in which it is offered.

    Family and friends will feel helpless to some degree, and want to "do something." If you can, simply allow them to do reasonable things and express your gratitude. Even though some help can hinder, it is still better than having no help at all. This is an opportunity for personal growth, in that you will find that letting go of the desire to control things gives you more control over yourself. And that is always good.

    As to general anxiety, what do you believe? Do you have a philosophy, belief system, coping mechanism, religion or? Time to dive into it. All of these are methods of dealing with the acute condition called life. Far better to believe in something than in nothing. I note that those who are most anxious, most panicky, in many cases simply don't know what to believe.

    Remember: One day at a time: That's how we're wired, and that is the physical world.    

     

     

     

    Thank you

    Thank you for the wisdom. You hit the nail on the head when it comes to worrying. What good does it do? My outlet is writing. I started a blog the day after we find out his diagnoses. Putting pen to paper (or typing away) is my therapy--but I DO like your idea of crossing things off the list. That's the way I work at my day job--small goals/assignments to cross off daily, then larger ones.  You're also spot on with the help. I am accepting it, and I am expressing gratitude. You are right, it's better than having no help at all. Had I not had the help I would have missed double the work time. My in laws love and care about their only son, and just want to be there in his time of need. I'm slowly letting go of control--life is unpredictable, who am I to try and make plans? I grew up in church, and I've carried that faith into my adult years and that's what I'm holding onto.  One day at a time. Smile

  • Shayfey
    Shayfey Member Posts: 10
    Jeff148 said:

    Your on the right path.

    Asking questions is great, especially to your Dr.; and folks on this site can be helpful as well. Max and I had the same chemo which is similar to what your husband is set up for. If you click on my picture it will take you to my site with info on how to get to my blog. There you will find things I did that were helpful....using baby shampoo for soap, puting lotion on my skin twice daily, taking antacids, taking stool softners before they are needed, mouth rinses all day etc.... You and your husband will get through this. The worst thing that hurt me was getting constipated from the antinausea drugs which caused a fissure which made my life miserable for months during chemo and months after. Gross, but I wouldn't wish that on anyone. While it is not easy, he will prevail.

    Thank you

    Hi Jeff,

    Thank you for your response! I took a look at your blog and appreciate the insight and tips you won't find other places. Something that stuck out to me was your answer about a caregiver: Don't treat me like I'm dying. That really hit home, because my husband asked me to do the same thing. The first week I wouldn't let him out of my sight and cried a lot, like this was a death sentence. But he wants us to keep trying to move forward and live as normally as we can. The only thing I'm continuing is showing more love--hand holding, hugs, putting down the iPhones and just being together. 

    The ladies at the chemotherapy were pretty adamant about him keeping up on his constipation meds. After his treatment on Monday I went right to CVS and picked up everything they suggested and started him on a regimine right away. So far so good, he's managed to go the last 2 days, which is better than we thought. I'm sorry how much pain you had to go through for something so stupid related to the meds. We are going to keep up on that, thank you for the fair warning. 

    I know it might be different for everyone, but with this type of treatment, did you feel your worst the first cycle or two? Or did it stay the same? We were told the first time would be the worst, but I'm not sure if it's true. It's all so new to us, and it seems like he is handling it okay so far--mild side effects, but he's still eating, getting up and walking, in good spirits. I'm taking that as a positive sign. 

    Thanks again for your advice!

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Jeff148 said:

    Back at you brother Max.

    You are amazing.

    Jeff the Mann

    It's your world Jeff, I'm just livin' in it.

  • Bryan K.
    Bryan K. Member Posts: 2
    Shayfey said:

    Thank you

    Hi Jeff,

    Thank you for your response! I took a look at your blog and appreciate the insight and tips you won't find other places. Something that stuck out to me was your answer about a caregiver: Don't treat me like I'm dying. That really hit home, because my husband asked me to do the same thing. The first week I wouldn't let him out of my sight and cried a lot, like this was a death sentence. But he wants us to keep trying to move forward and live as normally as we can. The only thing I'm continuing is showing more love--hand holding, hugs, putting down the iPhones and just being together. 

    The ladies at the chemotherapy were pretty adamant about him keeping up on his constipation meds. After his treatment on Monday I went right to CVS and picked up everything they suggested and started him on a regimine right away. So far so good, he's managed to go the last 2 days, which is better than we thought. I'm sorry how much pain you had to go through for something so stupid related to the meds. We are going to keep up on that, thank you for the fair warning. 

    I know it might be different for everyone, but with this type of treatment, did you feel your worst the first cycle or two? Or did it stay the same? We were told the first time would be the worst, but I'm not sure if it's true. It's all so new to us, and it seems like he is handling it okay so far--mild side effects, but he's still eating, getting up and walking, in good spirits. I'm taking that as a positive sign. 

    Thanks again for your advice!

    Great advice

    You have been getting GREAT advice here. I had stage 4 B CELL NHL, diagnosed in May of 2016, in remission in October of the same year. The only things I would add is ask them about holding ice chips in his mouth during infusion of the Chemo drug.  Reduces or prevents getting the mouth sores. Constipation is a BIG issue.  Stay on those meds.  Don't be afraid to bring up to the oncologist if some of the meds are not working as designed.  They have lots of choices for fighting the side effects of the Chemo.  

     

    For me the treatments got worse with each one.  By that I mean my bodies recovery time took longer after each chemo session.

    There is light at the end of the tunnel, hang in there.  Hope in some small way this helps.

    Bryan

  • Jeff148
    Jeff148 Member Posts: 184
    Great question

     I felt worse after the first treatment. I had the uncontrollable hick-ups and the sore mouth. And it took forever to get the chemo in the first time. The side effects of being nauseated  and tired became worse towards the end of my treatments. My main goal was to stay positive and not lose weight. I found Taco Bell to be a good friend. It was the only thing that I craved with my taste buds being so out of whack.

  • Simon24
    Simon24 Member Posts: 45
    Shayfey said:

    Simone,

    Simone,

    Thank you for opening up about you and your husband's situation. I am grateful for the advice. I love the sports analogy, I grew up playing many sports, so I get it. Since I wrote this my mother-in-law has spent the night 3 times and is watching over him since he started chemo on Monday. Again--I am accepting the help, I'm glad she is there, but still hard to get used to. (Especially when I come home to find that she rewashed all my silverware by hand because they were a "little dirty" and it was too bad I had run out of bread because my husband had to use the heels. Lol--roll with the punches, right?! I'll ask the oncologist if they have an online system--that would be convenient. So glad to hear your husband is in remission. Thanks again.

    Food and other things

    Hi Shayfey,

          After a few sessions of chemo your husband may lose his appetite, or develop an aversion to certain foods.  My husband complained that food was repulsive to him and he developed an aversion to bread, which he still has to a degree almost two years later.  He only ate because he knew he had to, but it was often a struggle for him.  I also made sure he had an Ensure or Carnation Instant breakfast every day. They come in different flavors.  I understand that there is even an Ensure that is made just for people who are lactose intolerant.  My husband is a big milk drinker and even on his worst days he still liked milk.  I often made him smoothies with fruit, ice cream or yogurt.  Our cancer center has a library and I was able to borrow some of their cookbooks that are designed to help with different chemo side effects such as constipation, nausea, sore mouth, weight loss, etc.  They had some recipes that my husband liked, and it made me happy because I felt I was keeping him from losing more weight.  You can find the books on Amazon if you don't have access to them through a library.  I know some of the others have mentioned that constipation can be a problem and I will second that.  My husband needed a prescription because the over the counter products weren't effective in his case.  Everyone is different so your husband may not experience the same side effects.  One other suggestion I would make is to buy a good digital thermometer if you don't already have one. We were told to carefully check for any signs of fever after chemo and our first thermometer didn't work very well.  I bought one that worked quickly and even had a cool color display.  Luckily, it always showed green which meant there wasn't a fever.  I'm so glad you are accepting the help.  You need to take care of yourself, too.  I'm wishing you and your husband the very best and hope that he will have few side effects.                              Simone

  • lindary
    lindary Member Posts: 711 Member
    constipation

    I had R-chop and RICE. When I started R-Chop I did as my oncologist recommended and started taking a stool softner the day of chemo and for a few days after. right. It took almost 5 days of tool softners before a bowel movement. Somewhere I had read a post about starting the stool softner the night before chemo. Worked like a charm.  Only constipated for 2 days after chemo. When I told my oncologist the change I had made and the result, she said if it was working better for me, do it.  Sometimes we have to tinker with the stuff that takes care of the side-effects. 

     

  • DadysGirl
    DadysGirl Member Posts: 346
    edited March 2017 #19
    I'm so sorry about your

    I'm so sorry about your husband's diagnosis. Where was your husband's lump. Neck and how large was it from outside could you see it or just feel it?

  • 123Kra
    123Kra Member Posts: 6
    edited March 2017 #20
    My 34 year old husband was

    My 34 year old husband was diagnosed with stage 4 two weeks ago and started ABVD last week. W are on day 4, and he is exhausted. it is hard watching him feel like this. i'm scared and am so worried about him. He was awake for about 6 hours today. He felt okay for three of them. Then the fatigue set back in. Does this get easier as I know what to expect from him? i haven't left his side the last 3 weeks but I'm worried I'm not being brave enough for him. Any advise or tips for a spouse? 

  • lindary
    lindary Member Posts: 711 Member
    Fatigue

    Fatigue is part of the process. Some people may be hit by it more than others. It varies by person and type of treatment. Is he eating something when he is awake? I she going to teh bathroom regularly? Talk to his Dr and tell him what is going on. They are your best resource.