My husband has Hodgkins Lymphoma

Amsterdamgirl · Regular Joined: 28 Oct 2009 Posts: 12

Hello,

My husband was diagnosed with nodular sclerosis Hodgkins lymphoma on Oct 14. A PET scan a week later revealed it was at Stage 3B. He had his first chemo on Oct 27 (he is doing ABVD, and they think he will need 6-8 cycles). We are both 43 and have been together for over 20 years, married for 16 years. I am Canadian, my husband is UK, and we live in the Netherlands. We have no kids (that's another story...).

My husband has been healthy most of his life, although he had to have his gall bladder removed 3 1/2 years ago, and he had shingles about 6 months ago. Shortly after the shingles, he started coughing. He finally went to his GP 2 months after the cough started and he got some medication for the cough. The medication obviously did not work so he went back to the GP. By this time, he had started to get other symptoms, like major night sweats and unexplained weight loss. This was now Aug 14. The GP sent him for blood tests and a chest X-ray, which revealed blood levels that were way off the charts and "unilateral lymphadenopathy" in the lungs.

He was then referred to a hospital to the internal medicine department. They told us there were 3 possible reasons for the blood and X-ray results: infection, sarcoidosis or lymphoma. Unfortunately, living in a country of socialized medicine, it took them TWO months to come to a diagnosis. We kept hoping for an infection, but it because less and less likely as time went on. They spent a lot of time with non-invasive procedures that did not reveal any conclusive results (CT scan, bronchoscopy, many other blood tests, endoscopic ultrasound). Having to wait for the results of all of these tests was agonizing. Finally, they sent him for surgery to remove one of the lymph nodes near the lungs for biopsy, which is how he was finally diagnosed.

We felt numb when we heard. Although we always knew it was a possibility, you are never truly prepared for the news. I still feel like a bit of a zombie - it all feels a bit unreal. We both have had problems sleeping since getting the diagnosis. I have this constant feeling of dread and fear. I think I'm just running on adrenaline taking him to all these appointments and taking care of all the other mundane things that need to be taken care of. I'll probably ask the doctor for sleeping pills for both of us.

I'm thankful that so far, the first chemo has not been too bad. He is very very tired sleeping a lot, but other than that, not a lot of other symptoms. I'm diligently taking his temperature a couple of times a day, and making sure he eats and drinks well and frequently.

Thanks for listening and I hope everyone else is doing ok.

aisha1

Hi,

I've just found your thread. I didn't know that you had one.

This is all very new to you and I know how it feels in the first few weeks, but you need to try and come to terms with it, and just deal with it.

If you find out about the Hodgkins, and the condition, or how exactly his body will overcome this, then it may help you. That is what helped me, and I really do believe that knowledge is power.

I don't think it's a good idea to get your husband sleeping pills at the moment either. I honestly don't think that you should take them as well. Give your mind time to come to terms with this all. Your body is being kept awake at night because of your mind, and that is only natural. Your mind is trying to let things sink in, let it do it's job. I give it a week, maximum. You will start to feel like things are becomming normal again, and it will all feel like a progressive number of stages with each chemo.

It also helpsto talk to people that ask sometimes, and the word "cancer" just feels like another part of your everyday vocabulary after a while. At first I used to opt for using the word "lymphoma" because I was scared of "cancer" but then a lot of people asked "What's lymphoma?" so in the end I just got used to saying "cancer" and it didn't feel bad. Now I am used to it.

When this is all new, you feel like you are living in another world (see my thread) but believe me, it all passes quicker than you think and you start to just get on with things.

What you can do now is just take your husband's temperature if he feels hot, or you think he feels hot. Don't take it 3 or 4 times a day for no reason "just to check" because it will heighten both of your fears. Relax a little bit and also let him relax as well. His body is under assault, but he can bare it, as have I and many others. He will be ok, don't worry.

Look after him, but be careful not to go too over the top. He will realise that he can do things a few days after chemo that he was doing before. If he doesn't do some light housework or something, his neutrophils can drop, and too low is not good. If he is able to get up and about, just let him. He will pace himself, and a good bit of movement is good for keeping your neautrophils up (lately it has worked for me).

Also, one last thing (I know this is long)...... let him eat what he feels like eating. His body will tell him, and he will get cravings for thing within a few weeks of starting chemo. Please just let him eat it, no matter how fatty you think it is, or what the alternative "healthy option" is. His body will tell him what he needs, sometimes it will seem like healthy stuff, sometimes greasy stuff. Doesn't matter!

Hope you are both doing ok. Tyr and forget the sleeping pills, it will only dumb it down and numb it out. I truely believe that it would be best to let your brain come to terms with everything. You will be ok again soon, believe me. You may have some strange dreams in the next few weeks but you'll be ok. It's just your mind, getting to grips with things (try Jung's theory!).

Aisha.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan

Hi Amsterdamgirl

Dont worry your husband will most probably be in remission when he has finished chemo. The trick is in staying there. Its no cake walk but he will get through this.

Good luck and keep us posted. I see Aisha has hopped in, I will leave you in her capable hands as she is our HL pro here Smile

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

Hi Amsterdamgirl

Let me offer up some first hand knowledge, having been through the chemo. Not sure if it will help or not but if it does then all the more better!

While I underwent the Chemo treatments I could see my wife worry herself to death. She was constantly asking me if I needed anything or what she could do for me. After a while, all I wanted was to be left alone. I was miserable at times and at other times I was full of energy.

I found myself lying around a lot and getting frustrated over not being in my normal routine of working in the yard or in my workshop from sun-up til sunset. After talking to my oncologist about this she was quick to point out that I had become somewhat depressed. She was right. I began to understand this and fought my way through it by forcing myself to get started on little projects and realizing that I may need to have a rest break or two and to quit putting pressure on myself to be the same old "me". I just finally accepted that I had to slow down for awhile, while my recovery was taking place.

The worse thing for me and the wife was what the "possible" side affects with this chemo could be. We were briefed on everything very thoroughly. While I view myself as a very strong personality I began to fear everything...if I had a normal muscle ache, I worried it was the chemo. If I coughed two or three times in a row...I worried I was getting something due to the chemo weakening my immune system. I was begining to become mentally unstable for I feared everything and all I could think about was if I was expereiencing a possible side affect of the chemo.

The end result of side affects weren't near as bad as to what they could have been. I lost only 50% of my hair, but then again, my hair has always been very thick. I never did get sick or naseuous due to the meds they had me take. Intially they had me come back in the next day after chemo for a quick shot of Nuelasta (hope I spelled that right) to help build my white blood cell count back. After three shots of this stuff, I realized that it was affecting me worse than the chemo itself. As a result, the oncologist tried me without the shot to see what my body would do. Amazingly enough, my body sustainted everything on it's own. So the main thing I learned was that my body was up for the fight but my mind was letting the whole thing play games with it.

So what was the biggest side affect?...the biggest side affect was that my wfe and I became closer than I ever thought we ever could have been after 24 years of marriage. She cared for me but learned to nurse me just enough for what I needed. Something in the chemo made me grumpy at certain times during my cycles of chemo...the wife learned to leave me alone during these times and just simply be there for me if I needed something.

As for my diet?....well..I cravd things...Pop Tarts became a staple for me!..LOL I never lost my taste for red meat, in fact, I began to crave red meats. I have always been a vegetable eater but this too increased. I would go outside and look at my garden and stand there and plan a whole meal from what I saw growing in my garden. Drinks however, were greatly affected. I could no longer stand the tatse of Mt. Dew. I tried other beverages and while something would taste great one day, I found I couldn't stand it the next day. Good old fashioned water became my main choice. I was on a two week interval of chemo...the oncologist knew I enjoyed some beer every now and then so she encouraged me to have a beer if I so desired but gave me a firm limit to adhere to. I found that at times I would try a beer and it tasted like someone had poured skunk urine into it. Other times, usually later in my two week cycle, I quite enjoyed the taste.

Yes, the initial news hit hard. Hard on everyone involved. As time went on though, we began to accept and to adjust. The chemo made me to become very emotional...the wife and I actually found humor in this aspect. I would be sitting and watching TV with the wife and something would just trigger me to start crying. At first we chalked this up to all the stress and anxiety. After a while, when i would start crying for no apparent reason, the wife and would look at each other and the tears would turn into hystercial laughter! That's just the way we found to deal with things.

Good luck with everything. Don't keep a lot of pressure on yourself. Hang in there!

Amsterdamgirl · Regular Joined: 28 Oct 2009 Posts: 12

Hi everyone,

Thank you so much for the replies and words of support.

Aisha - You are right. We both need time to get used to our new reality. I feel better (if you can call it that) already since writing my original post. I think I was still in shock mode when I mentioned the sleeping pills. Like you, my philosophy has always been not to take any medication. If I have a headache, I hardly ever take a pill for it, so I must have not been myself when I wrote that! Good advice on keeping a bit active to keep his neutrophils up. He has always been very active and I think I have to get used to having a husband that needs to sleep for 12 hours a day. The good news is that he went for a long walk today.

Cinnamon - Thanks for giving me the "hubby" point of view. By describing your wife, you have described me to a T! I can understand why my husband would want to be left alone sometimes, so I will take that on board. His mother is staying with us right now, so between me and his mother, we must be smothering him with our concern...and you are right, he is craving things that he wouldn't have normally eaten in the past. His current favourite is cake and ice cream. Also, he was a BIG wine drinker in the past and now he doesn't even want to touch the stuff.

Until next time.

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

Cake and Ice Cream!!!???

I found I loved ice cream myself, more than usual!

For whatever reason the cold temperature of the ice cream made me feel better everytime I had it.

And oh yeah, one more thing.....during the first few phases of my chemo, the wife and daughters would constantly ask me if I was "OK" or if I needed anything. After a while I fianlly pulled them all together and said "Ladies...if the Chemo and Cancer don't kill me you gals are going to!" Thankfully they were forgiving to their father and husband. Very Happy

Hang in there!

aisha1

I'm so glad to hear that you are starting to feel better now. You will feel more and more normal as the days and weeks go on.

I have been really grumpy recently. My sister is joking about me going through the menopause. Laughing

Don't know if that will happen to your husband - might be a bit odd for him to go through the menopause! lol

Cinnamon was right, I have been teary eyed a lot since I started chemo. Sometimes, like him, I laugh at myself. Tears of who-knows-what turn into tears of hysterics!

Keep in touch. Just tell your husband to pace himself because I think I may have over done it at times. Wink

Aisha
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

SingleDad

Feed him what he craves.

No "healthy" diets now.....go easy on grains and hard to digest stuff - ice cream and high fat high protein is what he needs - live yogurt really helps keep his digestive biota working as they get hit as well.

Each time he gets hit with the chemo he is effectively rebuilding his immune system....body needs fuel.

In addition the steroids affect his appetite and as the chemo works the food he eats will not be fully absorbed.

As long as his weight is not jumping up it's indulge time - it's good mentally and he needs the high energy easy digest stuff as over time he will absorb less .

One person here was onto PB & J - absolutely perfect.

Careful with anti-oxidants like red wines and certain juices as they are counterproductive to the chemo.

What you eat to prevent cancer isn't the stuff for being on chemo.....by all means go back to it after remission.

My worst was losing my taste for coffee !!!! the horror....I knew I was recovering when that came back Wink

Humor, some treats, positive outlook all help his fight...and lots and lots of sleep.

I use to fall asleep in my chair almost then stagger 5 feet to the bed.

Lucky I work from home.

Good luck - it should bring you all closer but it's a tough journey.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

SingleDad said "Good luck - it should bring you all closer but it's a tough journey."

One of the best things that came out of our ordeal of Hodgkin's is that the wife and I are closer than ever. Once a man goes through this thing he no longer takes his wife and day to day living for granted. I am truly grateful for my wife's care for me and her patience for me. Bless her heart, I just couldn't say enough good about her.

Amsterdamgirl · Regular Joined: 28 Oct 2009 Posts: 12

My husband had his 2nd treatment of the first cycle yesterday. They almost postponed the ABVD because his white blood cell count was too low. However, the oncologist decided to proceed and he will receive a Neulasta injection today or tomorrow. The Neulasta was delivered this morning and a nurse will come by our house to show us how to do the injection. I was shocked when I saw the price of the Neulasta - over EUR 3,000. EEK! Thank goodness for socialized medicine!

It seems that Neulasta is longer lasting than Neupogen so he will only need to take one injection every 2 weeks. I read that Neulasta should not be taken within 24 hours after or 14 days before chemo treatment, but they seem to be keeping him on the day 1 and day 15 ABVD, so if he gets his injection tomorrow, the next chemo will be within 14 days of the injection. Not sure if this is ok. The nurse giving the ABVD yesterday didn't seem to think it was a problem. Has anyone had experience with Neulasta injections?

Prior to having the 2nd treatment, he was starting to get his energy back again - he was taking daily walks of about an hour, and helping out around the house. The chemo seems to really wipe him out, and he has trouble sleeping, which tires him out more, so it's kind of a vicious cycle. One of the nurses told us that the dexamethasone (which is the steroid they're giving him along with the ABVD) can cause your brain to run around like crazy (sorry, she said it in Dutch, so I'm not sure of the exact English translation, but my husband pretty much says that he can't stop his thoughts from running around in his head and therefore he can't relax and get restful sleep).

Cinnamon - I got teary eyed when I read your post about how you and your wife are closer than ever. When did your treatments end and how are you feeling now?

Single Dad - It's still cake, ice cream, and now KitKats. I have always been a healthnut and it seems wrong to me that he's eating these things every day, but your advice is the same advice that the nurses are giving him. He lost about 20 pounds in the last 6 months for no reason (well...other than the lymphoma) so I know that the goal is to get as much fuel in him as possible, and maintain his weight. So for now, he is getting to eat whatever he wants!

Aisha - Hope you're well.

Amsterdamgirl · Regular Joined: 28 Oct 2009 Posts: 12

By the way, I forgot to mention in all of this, that my maternal grandmother is a non-Hodgkins lymphoma survivor, she had the same type as Single Dad's. She is 11 years cancer free and is now 93! There are so many people who are an inspiration to me these days, and my granny is definitely one of them!

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

Amsterdamgirl,

My last treatment was given to me on September 30. 6 weeks later now, I am feeling very good and seem to have my same old ornery spirit back with me. I have almost all of my energy back now and what hair I did lose is starting to come back. My taste buds seem to be back to normal once again and my veins in my arms have finally stopped hurting. So everything is looking up and I am feeling GREAT! Thanks very much for asking.

You asked about the Nuelasta injections. I was initially started out on Nuelasta with an injection at least 24 hours after my ABVD treatments. My oncologist would not give it to me any earlier as I guess this is standard protocol to wait at least 24 hours.

Nuelasta affected me in a very adverse way. It made me feel like I had the flu or something like that. My bones ached as well as did my muscles. My head seemed so fuzzy and I couldn't think clearly. For three days after my Nuelasta injection I took Ibuprofen to help ease the side affects I was feeling. After 3 or 4 Nuelasta injections my Oncologist decided to try me without it. I was thrilled to find out that my body was producing enough white blood cells to keep me going. In fact, I was scaling out on the upper middle range of what was acceptable for the white blood cell count. I never had to take the nasty stuff again... Laughing

Your husband seems to be going through the same "cycle" that I went through. I had the ABVD on a Wednesday, every two weeks. On the day after my treatment I felt fine but for the next several days after that I was pretty well fatigued and had "Chemo brain". I went to work everyday but would have to grab a nap at lunchtime and again when I arrived home in the afternoons. I just felt like I was living in slow motion. BUT..by the time the following Wednesday rolled around I was feeling much better and was almost back to full speed until my next treatment rolled around. My biggest problem was that prior to my chemo starting I was very active most every day of the week so I had begun to get a bit depressed by being faitgued and knowing everything that I had to do. So as a result, on the days that I started feeling my energy come back I would work like a dog to get things caught up!...LOL

As time went on with more cycles of Chemo under my belt I did begin to notice that it took longer to get my energy back but I learned to cope with it.

So yes, you learn to adjust during chemo but it is no fun in doing so. In my case I tried to stay focused on the end result of going into remission. My wife gave me encouragement and she would attempt to do some of the things that I had always taken care of....things like working in the garden, canning things out of the garden, and other tasks that had typically been mine to handle. On a funny note....I'll never forget when I mentioned that the garden needed tilled to get rid of some weeds that had come up. I was too fatigued to try and run the tiller to do the job so the wife decided she would do it! We went outside and she had a stool set up beside the garden for me so I could be outside and watch her run the tiller and give my typical manly orders on where to till and where not to till. Well...long story short...the tiller was really working her over and jerking her around...I began to laugh so hard that I fell off the dang stool and into the dirt in the garden. She saw me fall off the stool laughing hysterically and she let go of the tiller and began to laugh at herself as well as me. When she let go of the tiller, it ran into the fence before it stopped on it's own and she came over and sat down beside me in the dirt and we both laughed our heads off! It was a very warm day with plenty of sunshine and we must have sat there in the dirt for 1/2 an hour just talking and laughing. Times like that is what brought the wife and I closer to each other. We had learned that we could lean on each other and make it through this wicked thing they called "cancer".

Keep us posted on progress. Sounds like things are going fairly well, considering the circumstances.

Very Happy

SingleDad

That's a great story. Staying upbeat and positive is sooooooo important.
25% of cancer patients get depressed and it's very hard on their outcome.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

Amsterdamgirl · Regular Joined: 28 Oct 2009 Posts: 12

Cinnamon - I am glad you are feeling great so soon after your last treatment! How many cycles did you do and at what stage was your Hodgkins? We are definitely trying to stay focused on the end result of going into remission and it is good to talk to someone who has come out at the other side feeling pretty good about life.

Yes, my husband is pretty much on the same time schedule as you. He has chemo every Tuesday, and the Neulasta is given at least 24 hours after the chemo. The Neulasta side effects have so far been a headache and jaw pain, fairly manageable with paracetemol/tylenol. It's funny, my husband seems to react to the AVBD the same as you. On the day of, and the day after the chemo, he seems to feel ok, and then on the 3rd and 4th day, he feels quite cr@ppy, and then he starts feeling better again on the 5th day. He did mention not being able to concentrate as well, so I guess that is the chemo brain. He is starting to get a sore mouth now as well, despite religiously gargling and rinsing with salt water. The doctor did warn us that he will get more fatigued as the treatments continue. I don't know how my husband would be able to work right now. He pretty much sleeps at least 12 hours a day (when I say "sleep", I mean, lying in bed - he still has problems actually getting "good" sleep). Also, his job entails quite a bit of travel, so I think that getting on a plane on a weekly basis is out of the question at the moment. Anyway, we are very lucky in that the social system here in the Netherlands means that he is still being paid while going through the chemo treatments and not having to work.

I like your gardening story. We could sure use a good laugh right now.

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

I went through 4 full cycles of ABVD and when I diagnosed they put in stage 2-B, I believe.

I had lymph nodes affected in two areas, both above the diaphram, and I had virtually no symptoms whatsoever. I was very fortunate in the way that everything was found in the fact that it didn't take longer to find my issues. Otherwise I would probably have had more affected before everything was diagnosed.

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