Your husband has lymphoma Oh and you're pregnant

Physical Health Cancer
1

Hey everyone,
I'm all for extended threads but lately I've been asked to try and extract posts from long threads that warrant a new post/thread so as to bring them to a wider audience, and although I'm doing a miserable job of this so far, the following is one example. It was posted by a new member, martha (her original post is here) and I'll also post the awesome responses from everyone's favorite optimist, Phillip. I know, this process seems a bit clumsy ...

"Hi, I have been reading all about your experiences and would like to share mine...
Married the love of my life, against all odds, able to conceived two beautiful boys. Everything was rosie...
My husband who is 15 years older than me, was always healthy, I was the one who complained of pains and aches and not feeling well...
He went to the doctor because of mild heartburn, but the day of the appointment he did not feel heartburn anymore and went to see the doctor to say it was ok. Doctor said to him, don't leave I will examine you anyway.Found a lump near his belly button...Scheduled for ultrasound...scheduled for ct scan on Thursday and Yesterday was told that he has Lymphona...yesterday I found out I am pregnant...What a blow...
He is having a biopsy to find out what type, staging I suppose and treatment... I am devastated but reading your posts here gave me hope and I feel a bit more at ease with the situation. Of course I am worried sick how we are going to cope, two small children, another one on the way...it is a rollercoaster but...I am hoping...
The mass is large 11 cm and I am dreading how he is going to cope too, besides he is afraid of needles:-)
Regarding the baby, we decided we are going to wait and see what his biopsy shows and take it from there...I don't want to terminate this pregnancy but I keep thinking that maybe I am being selfish when I think of keeping it...or I am not able to see how hard it is going to be...or I should be concentrating on him not nurturing a baby...I am so thorned but happy I found you guys."

2

From Phillip:

"Hey Martha,

First things first. Don't get ahead of yourself. First you have to find out what type of Lymphoma he has. Either Hodgkins or Non-Hodgkins Lymphoma. Second, regardless what type he has both are incredibly treatable with a very high success rate.

In my process they needed to excise a node before they could make a diagnosis of Hodkins Lymphoma and based on your note above, it sounds like that is where you are at. Once they excised the lymph node, it was off to the lab to determine the type. Once they determined that it was Hodkins Lymphoma, they sent me through PET/CT scans to determine the stage. I was diagnosed with stage 3A - meaning that it had spread from the groin where it started up to my chest. I did not have the classic symptoms of fever, night sweats, loss of appetite, etc. that can accompany the disease. The stage of the Lymphoma will ultimately determine what the treatment is. Prior to finding out, my Doctor told me that if it were stage one or two that I could count on 3 months of chemo and 4-6 weeks of radiation. Since I was diagnosed with stage 3, my treatment is 6 months of chemo and radiation is TBD and may not be necessary.

After you get the stage, your husband will likely go through a bone marrow biopsy and heart and lung tests to make sure they are up to the treatment. If I can offer some advice on the bone marrow biopsy, it would be to find out what type of anasthesia your Doctor will use. Insist that that they use a process that keeps him awake, but that he will feel no pain. If you have read this site, there is a wide degree of what Doctors do. I felt no pain during my procedure.

After that you should get a treatment schedule. I can only say that you can not plan on anything. Everybody responds to treatment differently. Your husband may have few side effects or they may be severe. You won't know until after his first treament. Either way they will diminish the farther he gets away from his treatment day. Keep us posted. I know it seems scary, but again, this a very treatable form of cancer. It won't be fun, but you will get through it."

Phillip

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From Martha:

"Hi Philip!
Thank you for your reply and thank you for being such an inspiration as when I first started to read your post you were really freaked out!:slight_smile:

Ok we got a letter from the hospital, was told the doctor was going to perform a bone narrow biopsy??? And if she thought necessary, would refer husband for lymph node biopsy…I am confused.

Anyway all this waiting is leaving us really anxious and sometimes I look at my husband and I see tears dropping…
it is heartbreaking for both of us. I know it is treatable, but I am so afraid of seeing him suffering, it is eating me away…

He never had any of the other symptoms, but has now started to display, loss of apetite, fever, sweats, and I am concerned. Is he displaying this symptoms because???
Anyway, will keep you posted.
take care. Martha"
4

Martha,

I'm not in the exact same situation as you are, but it is similar. My husband and I found at that he had Hodgkin's TWO DAYS before I went in to the hospital to have our second son. Needless to say, it was a roller coaster of emotions. On one hand, I was extremely worried about my husband, but on the other we wanted to celebrate the birth of our new baby. I cried for my husband, and cried for our baby that his birth would always be tied to a negative time in our lives. We are six weeks on the other side of that now, and I have to say that we have all adjusted well. My husband has started chemo (he's gone twice and soon going for his third), and our new little one is on a schedule and doing well.

To be honest, things are a little harder. For about three days after Greg has his chemo, I am taking care of all three of my guys. All Greg wants to do is sleep and eat occasionally, so I do my best to meet his needs while dealing with a newborn and a two-year-old. But, once he's a little further away from the chemo, he begins to feel more like himself and helps me with the boys. We've even still done a few activities as a family.

One of the things I've learned thus far is to be sure to ask for help when you need it. You don't have to be superwoman. Take good care of yourself so that you can be the best wife and mother that you can during this difficult time.

5

Hello Martha,

I know all of these unknowns are very scary at first but in time as you go through the process it will get better. These tests you mentioned are all normal in the treatment of lymphoma. My husband was diagnosed with Anaplastic Large Cell Lymphoma in May 2010. He became ill in April running a high fever, chills, night sweats, restlessness, loss of appetite and weight loss. He was hospitalized for two weeks while doctors worked to find out why. He had an incisional biopsy in his abdomen. I was so scared for him and for us. My first thought was I wasn't ready to lose someone that I had spent the last 29 years with. I was told that if you have to have cancer that lymphoma is the one you want because it so treatable. He is about to take his fourth treatment but had another CT scan a little over a week ago. The largest lymph node was 5.6cm in the beginning and is now 1.7cm with no other signs of cancer in the other lymph nodes. He hasn't had any of the original symptoms since his first chemo cycle. His reaction to the chemo has been minimal. We heard a lot of horror stories about side effects but were surprised that he has done very well. I guess what I am trying to say is not to get the cart before the horse. Go with him on his chemo day so he won't be stressed out. Try to be as calm as you can. I had a really hard time with that I have to say. All I could do for the first month was cry every time I looked at him. My children set me straight and told me that he didn't need that and I had to be strong for him because he needed me more than ever. They were right and I had to work on it. Take a deep breath and relax everything will come into place soon. My husband started feeling better within days of his first chemo cycle after the initial shock to his body wore off. He was extremely tired and slept quit a bit. The only tip I can give you is if he doesn't want to eat or is continuing to lose weight, push proteins. I bought protein powder mix and made shakes with milk in the blender. It seemed to be the only thing he wanted at the time. The doctor told him that his tastes would probably change and they did. Ben and I will be praying for you guys and new baby. As Gregwife said, take good care of yourself so you'll be able to care for your family and don't forget to ask for help.

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I'm very thankful for your post..and the people who responded. I am 6 months preganant, we have 2 children. Absolutely no money and job issues, and today..thinking my husband had a hernia..went to ER...he does not. They did a CAT scan and has lymphona..not sure what kind. To say I'm terrified would not even begin to describe how I feel. We go see an oncologist tommorow. Would appreciate prayers and any advice.

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Hi Islandgirl,

In reading Micheal’s post, I have to agree with most everything he said. The oncologist should be able to lay out a plan for your husband. I know time is short but if you could do a little research on the internet about lymphoma it would be helpful so you would know what kind of questions to ask. Feeling confident with your doctor is the most important part of the treatment. My husband has a med port in his chest that was installed by a surgeon to make access quick and keep from using up his veins. The drugs they give for cancer is very hard on the veins so this device is important. I know how frightened you must be, I was there myself in April 2010. The one thing I want to leave you with is that this cancer is very treatable unlike so many others. Be positive for him and for your peace of mind. We will pray for his health, peace, and your disposition. Jean

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@Martha and Islandgirl:

I have my own journal in the Hodgkin's Lymphoma section. It has some good advice to start with and this first note has my advice. Hope it helps.

God bless and good luck to you both!

I was diagnosed with NSHL 2B in March 2009. At the time I was going through the worst time of my life. I was fired from my job in October 2008 after 13 years, I was losing control of my mortgage (I since lost that battle, it went into foreclosure), my pickup truck was stolen (and I lost my insurance because I couldn't pay for it) and I was experiencing the signs and symptoms of cancer (though I didn't know it at the time).

I did start working again in January and luckily I just got my insurance before everything hit the fan. Long story short, I had a football sized tumor wrapped around my heart and my major vessels.

I have since completed chemo/radiation and I'm getting my life back.

My advice:

Find an oncologist that you trust with your life. That makes the entire difference. They will jump through the hoops so you don't have to.

Personally, if my oncologist would've told me that (to lock yourself in your house and avoid everyone) I would've told him to jump in a lake. Sure, your WBC count is probably going to bottom out. Just means that you need to be careful. Wash your hands religiously and carry some hand gel with you. Beyond that, just be wary around people that are or might be sick. People understand. They might not know everything going on but a quick explanation will work wonders. My WBC count was critical low after every chemo treatment. I was out visiting family and friends almost every day. The Neulasta/Neupogen/Leukine shots do their job.

Get a medport inserted. Much better and easier than letting them abuse your veins. Most med ports go into the chest wall. Because I had other issues with my tumor (collapsing one of my lungs) I had a medport inserted into my upper arm. Xport or Passport. No worries, no issues.

Accept help. I'm pretty much a stubborn *******. It took my friends and my family practically beating me to accept help. As a paramedic for 16 years, I am the one that helps people, not people helping me. It was a very hard concept for me to get used to. I still have to whack myself in the head every once in a while to remind myself to accept help.

Your family and your friends are there to help and they can move mountains. I didn't let them do everything for me, but I could have. That's the kind of friends I have. I hope you do too.

Write a journal. Whatever seems to be on your mind. It might help organize your thoughts and it keeps your mind strong while your body is being ravaged by chemo and radiation.

Get a pain killer for the Neupogen/Neulasta shots. Vicodin or ibuprofen 800mg (if you want non-narcotic). I'm personally not a big fan of narcotics, but every once in a while, it does take the edge off. Keep 4mg and 8mg Zofran tablets handy for quick acting relief from nausea. Prilosec (Omeprazole) 20mg does a good job with the gastric reflux/heartburn but keep liquid maalox/mylanta handy for immediate relief. Pepcid AC is another one to keep on hand. Imodium does a good job with the runs.

The ABVD (chemo drugs) will do a number on you, but for me the worst was the Neupogen/Neulasta/Leukine shots to keep the WBC (white blood cell) count up. I hurt like hell. I've talked to a few and it is different for each person, but most people experience joint and bone pain. Some days, shooting myself in the foot with a shotgun would've felt better than pain I was going through. Keep a pain reliever handy.

I lost my hair. As soon as it started coming out I shaved it all off. Wasn't going to deal with that. Get it over and done with. The steroids that your given will probably have the side effect of making you want to eat. All the time. I literally was up at midnight, 2 am, 4 am, eating because of the steroids. I went from 20 pounds underweight to 30 pounds overweight. I'm still overweight a bit.

I have a lot of family and friends. Once I went into the ER and ended up in the ICU for a few days, I had a continuous stream of visitors. Those visitors like to keep updated. Facebook was a wonderful way of keeping everyone updated. But that's your call, your privacy. It does help and it helped to keep my phone bill from being unbearable. My phone bill for the week I was in the hospital was over $300.

Just in case, get a Health Care Power of Attorney (even multiple ones). If something goes south, they can speak for you and make medical decisions based on your wishes, if you are unable to do so. Just make sure that you do express your wishes to those you designate as POA so everyone is on the same page.

If money is an issue, then get family and friends together to do a fundraiser. Bowling night, spaghetti dinner, anything you can think of. I have been blessed with some wonderful friends. They put together a hockey fundraiser together for me. At the time I was "Coach" for my ambulance company's class C hockey team. They organized and put together an exhibition game together with a bunch of firefighter friends that also played hockey. Do something that your daughter enjoys. Whatever it may be. People and friends will come through in the clutch. Be sure to go to local businesses for donations for a silent auction or raffle prizes.

As far as the boyfriend/significant other is concerned, I can't speak from experience but I'll say this: Keep them in the loop and abreast of any issues/problems/concerns. It was easy for me to try and feel sorry for myself. It was a good thing that my family and friends wouldn't let me. Family and friends just want to help. Let them. I'm not married and I don't have a girlfriend. But I have lots of family and lots of friends. My best friend, Nicole is happily married with two wonderful children. Aside from my parents, Nicole was my Health Care Power of Attorney (just in case). No reason not to be prepared, just in case.

And last but not least. Be positive. My family and friends were just amazed that I KNEW I was gonna lick this. It came down to this: I thought I had hit rock bottom when I lost my job, I was losing my house, I didn't have any money for Christmas presents. I literally was at the bottom. I couldn't go any lower. Then what happens? I get diagnosed with cancer. I literally got to the point that I actually laughed when I found out. Irony. When you can't go any lower the only way you can go is up. And that is the attitude I have. Nothing was going to stop me from getting my life back.

Being a pessimist does nothing for anyone. Being an optimist is like being handed a key to a new day every day. You don't know what doors you can open until you do. What wonderful things await discovery!

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All of you are truly amazing people & Ross as usual your a ray of inspiration & sunshine to all here with your wisdom/experiences & knowledge. I hope all are reading these posts.

Best regards, April

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Thank you so much. We met with the oncologist today. Liked him very much, compassionate and knows what he's doing (can't always get both in a dr.) We go next week for a biopsy..waiting is hard...

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Hi Islandgirl,

If you pass on your first name, I promise you that we will not seek you out. The biopsy and likely soon to follow heart and lung tests are standard operating procedure. The biopsy should be fairly painless. Just make sure to inquire as to what type of anasthesia he will receive. You are in the worst of times right now because you don’t know how severe the cancer is, nor do you know the treatment schedule. This will all be answered before you know it. Do yourself a favor, read the posts on this site. With Lymphoma we are not reinventing the wheel. Although everybody had different experiences with the tests and/or treatments it should give you a pretty good idea on what to expect. This is just a bump on the road to life. It won’t be fun but you can definitely get through it. Phillip

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Hi Everyone,

Well here is the latest update. I am at the half way point (hopefully) for treatment. I go in for PET/CT scans on Friday to see if the treatment is working. I probably won't know anything until I meet with the Doc the following Thursday which is my normal treatment day. I forgot how special going through the scans are...high protein diet 24 hrs. prior, followed by zero food and and any kind of coffee beverages 12 hours prior. I guess it is a small price to pay to hopefully get some good results. I hate to sound like a broken record, but...if the results are good then sweet, the holidays should be fun. If they aren't, well guess what? There will be a new treatment plan that will get me to recovery. Whatever it takes. As much as I don't enjoy the pink Lazy-Boy lounge chairs of treatment day, it is an ends to a means. Our struggles are all a little bit different, but we are all fighting the same fight. I'll keep you posted. Phillip

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Hi everyone!

Thank you so much for your posts.
I am sorry I have just been able to reply.

Still on a rollercoaster as hubby didn't have the biopsy done because they neeeded more blood tests. It is getting done tomorrow and at the end of the week, meeting with the oncologist.

We are much more relaxed about the whole thing, just realised that worrying constantly is not going to change anything, so we are just enjoying all the time we spend together with the children.

I will reply more individually next time and will give you all more info.

Once again thank you so much for your support and valuable advice. Take care

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Dear Islandgirl,

I know it is scary but the best way I found to deal with this situation is hoping and believing...

I was terrified too, but today I am calmer and possibly more rational, you will get like that too:-)

I truelly believe that my husband is going to be fine and that this baby I am carrying will grow up and my husband will be here to see that.

I am praying for your hubby and you, please do not stop believing.

Take care

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Thank you for your prayers and support…I of course will pray for your family. Hang in there…the baby’ll be a nice distraction. We have had a good weekend…the calm before the storm?.. Perhaps it won’t be bad storm. (praying for light drizzle…LOL) I’ll update later this week.

and you are right…being depressed, helps no one! and inspires no one. Blessing to all of you. Pray loudly :wink:

ordered Anti-Cancer a new way of life. and Cancer on 5 dollars a day. (a “comedy”) could use some laughter. I’ll let you know how they are.

16

Hi everyone!
We finally have the results: B cell Low grade non-hodgkins lymphoma.
Treatment will be 6 to 8 cycles of chemotherapy, rutuximab and steroids.

Doctor seems so positive but I am just afraid that she is like that because she doesn't want to scare us, when she talks everything sounds so simple...
I know she is used to this kind of situation and that is why perhaps she sounds so calm, so optimistic.
But anyway at least now we know what is really happening and we can deal with it.

to everybody else: hang in there, it is far from over but is the begining of the end of this illness and the start of a new life ahead. Please have faith.
Philip how are things going with you? Hope myy husband will react to treatment as you and can keep the sense of humour.

Take care, will keep you posted

Martha

1 Heart
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