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bcellnhl09
Posts: 3
Joined: Oct 2009

Hello,

My wife has just been diagnosed with Large B-cell NHL stage 4. She is only 21 and we have been married just about 2 years. This is a big shock in the family. She has been very healthy over the years and never had any issues. Instead of shopping for a new big home, I am worried about whether I have enough savings to pay the bills. She just went through her first chemo and have some side effects. I need help in determining if these are usual side effects or not and I thought this forum would be the best to get some much needed help. She is very fatigue and always tired and sleepy. She is also easily irritated. My biggest worry is when she walks around a little, she needs a few mins to catch her breath and also she feels her heartbeats are little faster sometimes. I checked her pulse but that came normal. She is eating and drinking fine. Just after one chemo she is very discouraged and don't even want to go through the rest of the treatment. It's very hard to see her like this but I don't know what else to do. Please reply and help me understand if these effects are expected or not.

Thanks.

birdgray
Posts: 8
Joined: Sep 2009

Although I never had chemo I do know how she is feeling. She is tired, scared, confused, irritated, frustrated, I could go on forever. I was 23, and my boys were 3 and 6. I had my husband drive me to my treatments 2 hrs there and 2 hrs back 5 days a week for 18 weeks. All I remember, other then the treatments was sleeping. My husband was so patient and supportive I felt I was the luckiest girl around. I am glad you are talking about it something my husband never did. Her body is going to need time to heal, we heal by sleeping. She will be OK; the hardest thing is unless you have been through it you really don’t know how she is feeling. (So never say I know how you feel) you as a caregiver will have very strong emotions and would benefit from talking with other caregivers. They are the ones who will be able l to tell you what to expect. As the one with the cancer and how she is feeling you came to the right place. Hang in there,
Bird

DennisR
Posts: 148
Joined: Sep 2009

Hi bcellnhl,
I was Dx'd with the very same disease, Stage4 NHL that was primarily sited in my colon with Mets, I was 60 at the time.
Yes, the side effects you described are very typical as a result of the Chemo. Your wife, and your family, are beginning a Journey and a long battle with a very deadly disease that will be difficult at times. The good news is that Large B cell NHL is a very treatable disease that responds very favorably to Chemo and the Oncologists have a huge amount of experience and success fighting it. Your wife's prognosis should be very good for a complete remission, but she will need all the encouragement, understanding, love, and compassion you are able to gather. It won't be easy on you or your family either, but you've come to the right place to get all the help and advice you will need. Her moods will shift drastically, and her emotions will probably run wild from fear, to anger, to disbelief, to self pity, try not to allow these episodes to effect your own emotions and feelings, which will be similar anyway.
Your wife is very young to have to deal with this Disease, as are you, but that should also work in her favor, she just needs to accept her vulnerability, and gear up for the fight ahead. Hope this helps a little, you've got a lot to think about and I pray that you will recieve the courage, strength, and wisdom you will need.
DennisR

bcellnhl09
Posts: 3
Joined: Oct 2009

Thank you and birdgray for kind words of encouragement. The week of the chemotherapy was very hard on her but after 5 days she is much better. She is able to walk around and do her things. She still has some burning sensation in her stomach and taking Pepcid for that but it seems it does not work for her. She needs to go through at least 5 more treatments. Will keep posting updates after treatment.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

I remember being diagnosed at 22, just getting married. First, both of you need to understand, fatigue is completely normal, and usually expected. Though our cancers are different, this is a sign that the drugs are doing what they need to. Between treatments, things should improve.

It will be totally understandable not to want to go through more. But if she can realize that should got through the first treatment, no it wasn't easy, she can get through the next one. Take each treatment one at a time - don't look at the end of treatments - it takes too long mentally to get there.

Finally, it is a lot for two young people (married or not) to undertake in a relationship as the two of you have. If there is one thing I learned, do not be afraid to reach out if you or your wife feel your relationship is strained. Talk to someone, when it starts. You have so much on your plate now, without trying to do more. It can be a counselor, support group, or even some form of minister. But don't be afraid to talk to someone.

Your wife will have good days, and bad days. There will be times when she wants to and have the energy to redecorate a room in your home. Then there will be times, she will feel that it is too much to even brush her hair. This first treatment is when you both learned. It is important that both of you listen to her body. I can't emphasize enough, do not push the body on bad or good days, but especially bad days.

While your wife is physcially and emotionally going through this, you shouldn't be forgotten either. Caregivers have a lot to deal with as well.

Just remember to reach out if you need.

Paul E. (Hodgkoid2003)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

My chemo was hard, but the first treatment was the worst for me. I had just about the same side effects for each treatment, but with experience I found ways to help make it better. I went every three weeks and the 2nd week was the worst. I had to REALLY want something before I would walk to the back of the house to get it. I did stop and rest. I slept ALOT. Naps are a very good thing.

Side effects are good, it means the chemo is working. I got tremendous relief from acupuncture. It took care of jaw pain (that really sucked) and the horrible constipation was a non existent thing after acupuncture. No amount of medicine did the trick like the acupuncture did.....seriously.

Don't stop the treatments, it'll be worth it in the long run. Lymphoma is very treatable.
Don't give up. Drink LOTS of water, it helps get it out of your system quicker. I hope this helps. I know my husband did about everything for awhile, and I can't tell you how worried he was about me. It hurts us when the one we love hurts. You two can do this!

Take care,

Beth

Tony39's picture
Tony39
Posts: 3
Joined: Jun 2005

One thing your wife will probably complain about is the pain in the back of her throat. If she does, that is normal. The Dr. may prescribe Duke's mouthwash as did mine. It tastes nasty and works very little. Go to the nearest WalMart and buy a bottle of Maylox and Benadryl. (the spelling is probably not right) But you can get these over-the-counter, and mix them one dose at the time, 50/50. Let her gargle with this solution and she'll be alot more comfortable. It won't interfere with any of the meds that she'll be taking (is what my dr. told me). The maylox will help her throat heal, and the benadryl will deaden the pain so that it can heal. Forgive my spelling errors but ask your Dr. first if you want, then report the results and how much better it feels to him/her also. God be with you both.
Tony

DenJ
Posts: 26
Joined: Oct 2009

Hey there.....I just completed six treatments of Rituxin and Chemo for stage 2 NHL. Now I will start out by saying everyone reacts different to Chemo so your wife may not get the same side effects as someone else. But having said that....I foung that the fatigue and tired feeling was one of the most prevalent of the side effects. For me, I wouldn't get them until about 3-4 days after my treatment. I also developed a "sensitive" mouth and was prescribed a mouthwash that I would swallow and it did help some. My taste buds took a vacation too. I would advise her to tell her ONC of ANYTHING that seems out of synch....chances are, he can prescribe some meds for relief. But it's important to find out if it is anything more serious. I don't mean to scare you, but better to be safe. Now.....here's the kicker.....if she can keep a positive attitude....don't let this thing run her life and make up her mind she is gonna whip it, she will see that it's gonna be ok. I only missed 3 days of work because of the Chemo. Mind you, some days it wasn't easy, but I made up my mind to NOT let it change my life. I am so far in remission, but it is still early, my last treatment was Sept. 3, but I feel I've won this battle. And as far as all the $ problems.....they will work with you. The best of luck to you and your wife.....God Bless

bcellnhl09
Posts: 3
Joined: Oct 2009

Hello All,

Thank you very much for the support. She is doing better in second week after the chemo. She is not fatigue or tired anymore but I may explore the acupuncture to help her with some pain in jaw and back. She is starting to loose her hair. Any good places or website to get a wig?

Thanks...

Alice Payne
Posts: 6
Joined: Sep 2009

When you have chemo, it is normal to be very very tired a lot of the time. I had eight rounds of chemo last year and then chemo again at christmas to set me up for a stem cell transplant. I am still not "back to normal" about fatigue. Your wife needs to be patient with herself, and you need to do all you can to ease her way. Fatigue is the number one problem with chemo.

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi bcell,

Copy & paste this link in your browser it's a place to start for head covers and wigs.

http://www.tlcdirect.org/depts/HairLossProductsforWomen.html

This link is through cancercare.org, if you are in the NY vicinity they are having wig clinics on Nov 6 and 20, Dec 4 and 18.

http://www.cancercare.org/get_help/community_ed.php

Good Luck!!

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