I'm sorry to hear about your brother. It is true when someone has cancer, the entire family becomes part of the cancer journey too.

Let's start at the start. There are many types of lymphoma starting with hodgkins lymphoma and non-hodgkins lymphoma. Then within those two there are many subcategories including B or T cell and then staging and grading and fine tuned diagnosis. It is almost impossible to determine his treatment until all that is fine tuned. Some types are curable and some are not curable but treatable meaning you deal with them long term with hopefully long periods of remission between. All these things factor into what type of treatment he will receive and what side effects he will experience.

Because Lymphoma is a blood cancer (regardless of type), it isn't unusual to have it in your bone marrow but not everyone has. So staging is a little different then other cancers. For example, I am stage 4 because mine is in my marrow but that isn't as serious as say, breast cancer stage 4. It just means it left my lymph system. You can get lymphoma tumors in multiple places but it is most likely he only has one type of lymphoma. You actually have lymph nodes all over your body.

Lymph nodes are critical part of your immune system. When you have lymph nodes removed or they get damaged (radiation), you can have lymphedema which is chronic swelling I believe you are referencing. You don't always have to get your lymph nodes removed to cure the cancer. Chemotherapy and radiation can rid you of cancer but not remove the lymph note. I think I've only had 2-3 lymph nodes removed total and I do not have lymphedema. But if it takes removing them to cure him or help him feel better, there are ways to deal with lymphedema. People with breast or uterine cancer often end up with lymphedema because the lymph nodes often have to be removed to fight the cancer. Lymphoma isn't always the same path.

I think when you mention a catheter, you are meaning a port. Ports are placed to help with chemotherapy depending on the type. Ports can be a godsend because you don't have to have your veins accessed over and over. But it is visible and you have surgery to put it in place. I've never had a port but my aunt did. She was very glad she had a port. If you don't have a port, each chemotherapy or blood draw, they have to poke you or start and IV. I think it really depends on the type of chemotherapy you receive. I had to try to keep my veins healthy and drink lots of fluids so we didn't have vein issues each week but I made it through okay.

As far as support, everyone is different on what they need and how they feel about it. Lots of it will depend on his treatment plan. I did Rituxan only for a series of 8 weeks. It didn't make me sick but it did make me tired so I had people help with grocery shopping and running errands. I was able to continue to work but I did cut back on nightly activities and often went to bed right after dinner. If he has more serious chemotherapy, he might have mouth sores, be too tired to drive, have nausea, and struggle with the taste of food and other symptoms.

I would ask him what he would like. Some people like to do the journey alone or with one or two people while some people really want everyone involved. You might consider helping with the kids by driving to activities or hiring a housekeeper to help him family. Bring in dinner a few times a week. But also help with fun stuff like family time together if that is something you guys do. Try to figure out how to maintain some of the normal routine and activities so it isn't all about cancer all the time.

For me, I didn't want to be defined by my cancer. So I enjoyed talking about other things too. Planning trips for after treatment (I love to travel) so I have something to look forward too. Having someone walk with me when I was exercising. I eventually asked my family to talk about other things besides cancer. I also started a blog to keep people posted on my progress without having to field many phone calls at a time. That was exhausting to me. One thing I suggest is to think what you can help with an offer it. Many people say "Let me know if you need help" but I rarely do make that call. Those that say "Let me bring in dinner on Mondays" or "I will come by Saturday and do laundry while we play cards" is better because it is specific and helpful without me having to figure out a task for someone to help me with.

As far as nutrition, some guidelines will be offered as part of his treatment plan. But mostly, I would focus on healthy nutrition with lots of vitamin rich veggies and lean protein. Cut out sugar and fat as much as is reasonable. You want to give his body the fuel to fight the cancer and manage the chemotherapy the best possible way. I don't know that there is any specific changes necessary in a diet. Once you have cancer, I don't believe you can reverse it with nutrition alone. Many people say to cut out sugar because cancer feeds on sugar. My own personal research didn't follow that same myth but I do believe too much sugar in a diet is not healthy regardless.

My oncologist told me one piece of information that I think was the most valuable to me. He said having a positive attitude and good support system is one of the best things you can do to fight cancer. Someone with a positive and hopeful attitude will receive the treatments better, have less side effects, and better outcomes. He says it is a great compliment to the chemotherapy. So I have always focused on being positive even when it was tough. I have learned to embrace my cancer over the years. We are at peace with each other now....and I have very long periods of remission. I am okay with that!

Hats off to you for being there and wanting to help. That is a huge thing and will make a difference. You are a great sister and I'm positive he will appreciate your efforts.

Please let us know if we can help with more information.

Oh and I meant to say at closing, don't think of cancer as a death sentence. There are many of us living happy and healthy lives post cancer.

I have B cell Follicular (small cell) Non-Hodgkins Lymphoma. Stage 4, currently grade 1 (but I was grade 3 in 2014). I was diagnoses in 2003. My son was 6. I am a single Mom and live alone with my son. I've done two series of Rituxan alone (8 infusions per series) in 2003 and 2005 and in 2013 and 2014 I did radiation in my right eyebrow. I had 7 years of remission between treatments. I'm currently in remission again. My cancer can't be cured but it is treatable. My son is now 18 and is graduating high school this Spring. He is headed off to college in the Fall.

Lexisgirl,

Thank you so much for your words, they are priceless. Hats off for you, you are a warrior, Im just a sister who loves her brother. Ive read these threads and I could see that you are always here for others, giving your advice and support. Your words of encouragement are precious. Thank you so much for that.

Tomorrow my brother is going to have his first consultation with an oncologist, until now he was being followed by a hematologist. He is going to know what type of lymphoma he has, the stage, when to start chemotherapyeverything. My heart is sinking.

Today, Easter Sunday, we were all together, in my mothers home. She has a wonderful garden in the backyard as well as a huge vegetable garden with many fruit trees, some of them were planted by my brother. He was staring at them today, his two kids next to him, and I could see he was fighting the tears that wanted to come through One of my brothers (we are five) lives in a different country since four-five years ago but he came to spend Easter with us. When he arrived, they hugged and we could see they were fighting tears, two big boys fighting tears, how sad and lovely is that?

The big issue is my mother, she is nearly eighty and this is too much When everybody went home, I stayed with her. She is a widow and lives alone, but Im spending Easter holidays with her (Im single). When everybody went home, she entered her room and cried. She cried like a baby, feeling so impotent, knowing that one of her babies is going to start a battle tomorrow, a difficult and undeserved battle. I wanted to comfort her, but all I could do was crying with her. I know that my other brothers feel powerless like mewhen we are together we laugh, we talk about other stuff, but when we go home we feel completely miserable. What can we do to help him? My God, I would do anything! I would gladly give years of my life to help him! We would carry the burden together, if we could, but chemotherapy is going to be put in HIS body ONLY. I feel so sad, so miserable, and so weak. I wish I could do more; Im so sad, sadder than Ive ever been.

Today is not a good day. Im sorry for venting. Im sad and angry at the same time, asking, why? Why? Why? The word chemotherapy makes me sick. God bless you all for being so tough. I feel useless today. I feel crap. Im tired of crying. The tears in my brothers eyes today were too much to handle

Thank you all for reading. Wish you all, warriors, the best.
Mathy

Sounds like you had a fabulous Easter with your family. I'm sure it was bittersweet with tomorrow's appointment around the corner. Believe me, we've all cried until we were positive we were cried out. I think crying is very cleansing. It is a very natural release of emotions. I will be thinking of your brother and hope he receives the best news possible tomorrow. Keep in mind that chemotherapy isn't the worst thing out there. Think of it as soldiers being sent in to attack and kill the tumors.

Thanks for your faith in me. I made it my mission to help others in their fight. It brings me purpose.

Please do keep us posted what he learns tomorrow.

My brother has a NHL and it must be really aggressive. He asked the oncologist what type was, the stage, etc., but she said that that didnt matter because he should only focus on the treatment. And then she started explaining what he has to do: he is going to be admitted to the hospital next Wednesday, he wont be able to receive the chemotherapy and come home. He will have to stay in the hospital during the chemotherapy. He was not expecting that. We were not expecting that. Almost all cases I know or read about are of outpatients, meaning that they receive the chemotherapy and come home. He will have to stay in the hospital for 4-8 days, depending on how his body will respond. Six rounds of this type of chemotherapy and then re-evaluate. He was warned that he may need a blood transfusion because the treatment is really aggressive. So, although the oncologist didnt say anything about the stage of the lymphoma, she said it all

How can you people cope with this monster?! I cried almost all night, went to work completely devastated. Im a teacher and I had a lot of trouble to figure out what I had to say. I cant smile, I cant laugh, I even got really sick because I was so nervous that my body couldnt handle my anxiety and sadness. And this is me. Im watching. He is going to go through this. The sadness in my brothers eyes, my mother sitting and crying in silence, after he went home all this is too much for me to accept. I love my family so much; I cant stand the idea of my brother going through this hell. I cant say anything more today; I feel powerless, I feel useless. So, so sad.

Thank you for reading,
Mathy

This is going to sound weird but it is good it is aggressive because that means it can be cured! The doctor is going to attack it aggressively to give your brother the best possible result. It is almost better to be inpatient with that type of treatment because they can watch him and help him should he have a tough time with the side effects or have an allergic reaction. So while it is serious and certainly scary, you can remain hopeful that they will get him through and he will hopefully be okay.

I'm surprised his oncologist wouldn't tell him what it was exactly. It can help to know. I do insist my doctor be transparent with me but on the other side, my aunt who has cancer doesn't want to hear everything. So everyone is different.

Was it a blood transfusion or a bone marrow transplant? It isn't usual to do a BMT as part of cancer treatment. Doesn't mean it is bad. It means they need to do another type of treatment to help him survive.

I suspect you are struggling with the emotion which is totally normal because you are scared. Scared for what he is going through and scared that he won't make it. I suggest you find a way to focus on the here and now and making every day the very best possible. Being hopeful will help you support him and help him with hope when he struggles with it. It's not to say you have to always be upbeat and positive but try to focus on the positives. They know what he has. The doctor is competent. They have a treatment that they know to work. The nurses will be close to help him should he need it. He won't be exposed to infection being home. He will be able to rest and take care of himself and the very basic level. Focus only on him living and surviving.

There are great support groups at most cancer centers for caregivers. It might help to attend a meeting or two to see if you are helped talking to others. Of course, we will help you here too but in person might be a good addition.

And if you really find yourself down and you can't shake it, talk to your doctor about it. Many people receive help with anti-depressants. Cancer is tough to take on without some help.

Hugs to you.

Again, thank you so much for your kind and wise words. These are really tough times. Your support is so welcome and valuable to me.

Thank you,
Mathy

Just checking back. How are you Mathy? How is your brother doing?

Lexisgirl,

Thank you so much for your concern. Ive been absent because sometimes I just need to hide in my cocoon. But its good to know youre there.

My brother was admitted to the hospital (9th April) to receive his first round of chemotherapy. He entered on a Thursday and was discharged on a Monday evening. He handled it very well, no side effects, apart from a stomach pain three days later, which was easy to solve. A week later he went to receive another dose of chemotherapy (a small one), 3 hours only and back home. This time he had some pain in his joints, but he handled it smoothly. And then the 'bomb': my sister-in-law wanted to know what type of NHL my brother had, but the answer was difficult to accept: mantle-cell lymphoma, a rare type which has both the negative aspects of lymphomas non curable but aggressive. Thats why I felt the need to close myself in my cocoon... I read about his type of lymphoma and the news were devastating. It is aggressive and it will come back. I wont even talk about the worst case scenario...

I lied to my mother and I told her Ive read everything there is to read on the internet and my brothers lymphoma is totally curable. She stared at me. Im not sure if she believed it. She is suffering. We all are. I feel Ive aged 50 years in a couple of months. As I told you, we are very united, we all have cancer (as you so wisely said about close families)... Im not married, I dont have kids, so my family is my mum, my 4 brothers, my nieces and nephews. I would gladly give years of my life to have my brother here with us until we are really old. We used to say this in our family meals, we used to say that we would be 100 years old and we would still be laughing about things we did in the past, my brothers finding flaws in all my boyfriends, etc., etc. The idea of having one of us missing those lunches/dinners... I would rather die myself. I have no words to tell you how much I love my brother(s), so this is killing me. The idea of him suffering as Im sure he is...its is the worst thing Ive been through.

Yesterday, we had another family afternoon and he told us that he had been thinking and he must have his head shaved. His hair is falling. He is going to be admitted to the hospital again for a second round of chemo, so he has to make sure he wont be losing hair. There was a (big) moment of silence and then my older brother started to make jokes about bald people and we all laughed; well, we did our best, at least. (We live in Europe, its spring time here. My older brother said that hair is not needed during summer; oh well...)

I really feel I can speak my heart when I talk to you. You understand what Im saying and you understand what my brother is feeling. Thank you for reading and caring. Know that you also are in my prayers. You cancer patients all are.

Mathy

I totally understand Mathy. Sometimes retreating is important to coping.I'm glad he handled the first round okay. Sounds like he is taking it in stride and personally, I find a little sense of humor is good.

Is he by chance getting Neulasta injections? If so, those can be pretty uncomfortable the next day. I've never had one but I've heard that taking Tylenol and Claritin before and after your injection works wonders! So ask the doctor about that. The last thing he needs is that joint pain for a few days.

I admit I don't know much about MCL. But the little I read, it sounds like they have different options for him to reach remission and help him feel better. I hope he finds the right combo and experiences a very long remission period.

Sometimes I think being the cancer patient is easier than a loved one of a cancer patient. We can be treated and actively fixing things but a loved one sits and watches and often feels helpless. Know your feelings are not unusual and you are not alone. It will probably bring your family even closer together.

I'm glad I am helpful. That means so much to me. Hang in there and let us know what else we can do to help.