First treatment this week (rCHOP) - And Scared

Spam
Spam Member Posts: 6 Member
edited March 2023 in Lymphoma (Hodgkin and Non-Hodgkin) #1

I thought it might be helpful to post here.


I am a 35 year old male with 2 beautiful daughters (3.5 and 1.5 Years old) and a most beautiful wife. I am scared that I wont get to see them grow up. I have a really good disposition on life and I am relatively healthy. I haven't had any symptoms from my Nodular Lymphocyte Predominant Hodgkin's Lymphoma. I have had multiple biopsies in the past come back as "overactive lymph nodes" This last time around was actually going to be my last biopsy because I hate how going under makes me feel afterwards and the lymph nodes have been on my neck so overall I just didn't want to have to go through that again. On this last biopsy back in October I found out I had Lymphoma (a rare one to boot). I start treatment this week and have had my educational appointment and I am just worried that I am going to die during treatment as it was one of the possible side effects.


I don't have any symptoms (other than being itchy and the occasional night sweat). Is it worth going through chemo? This is a slow growing lymphoma. I just want to be around when my kids hit mile stones.


I am trying to stay positive for my wife and have done my best to stay "me" through all of this and for some reason this is the first time I am just scared. I figured this might be a good outlet to let this out and not burden my wife with this information because I can't undo this conversation if this is a moment of weakness.

Comments

  • Cllcaregiver528
    Cllcaregiver528 Member Posts: 1 *
    #2

    I am new here, and your post was the first one I read. Let me start by saying I wish you the best in your treatment outcome, for both you and your family. My husband was recently diagnosed with CLL. From being his care taker, I would like to recommend that you open up to your beautiful wife about how you feel. As my husbands care taker, I can tell you that we are going through it with you. We already feel helpless cause we can’t change the diagnosis or change the outcome as much as we would love to. As a caretaker it’s not a burden on us. We need to know how you feel so we can care for you. We need you to share your thoughts so we know how to proceed and move forward with the hands we have been dealt. The feelings, the stress, the anxiety ect. Is best dealt with, through both of you rather than just yourself. The stress itself takes its toll on your already fragile state. So relying on your other half allows you to remove some of that weight you are carrying alone and allows you to put that energy into fighting your battle. I wish you the best and wish for you to be at everyone of your family’s milestones to come. Take care.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #3

    I noticed this message and was suspicious of it, firstly because of the name “Spam”. I then tried to PM Spam in case it was real and this person really needed help. The name Spam could not be PM’ed. Spam if you are a real patient wanting advice or help I would recommend posting again with a new username. Several people here have the same condition and could offer valuable advice.

  • Spam
    Spam Member Posts: 6 Member
    #4
    https://csn.cancer.org/discussion/comment/1703242#Comment_1703242

    Thank you for saying something. I read your message after you had posted and digested what you said. I haven't actually had a conversation with my wife about this because that scared feeling has now passed. I am confident and ready to take on treatments (Starting Monday). I have no option but to make it through this for my kids and my wife so the fight begins. I can honestly say I am blessed to be on this side of it all. If there was a side to be on this is the side I would choose. Now that I am no longer scared I probably should take this opportunity to speak out. I do fear that if I mention it I can never un-mention it. I fear that it is something that will always weigh on her mind even if I mention it. Thoughts? IF your husband kept that fear to himself would you rest easier at night?

  • Spam
    Spam Member Posts: 6 Member
    #5
    https://csn.cancer.org/discussion/comment/1703285#Comment_1703285

    I think that might be because I hadn't verified my profile. I am indeed a real person with feelings. My user name anywhere I can is Spam (The food). Because I love the irony especially in a forum setting. Maybe as I post more often my credibility will increase without having to create a different account.

  • dmvalvoda
    dmvalvoda Member Posts: 1 *
    #6

    New to this board as well but here to tell you that yes chemo can be scary but it seems like you’re past that initial fear. I firmly believe attitude is half the battle. I was diagnosed with Hodgkins lymphoma. A tumor up against my stomach was making normal eating impossible and the resulting weight loss and night sweats led to diagnosis. I am now ten treatments done with two to go and my tumor is all but gone. Well worth it. My treatment was different than yours. I have had A+AVD but I do know people who have done very well with rCHOP


    you have your other half and as someone else posted, yes let her be part of this. I am not lucky enough to have that. One other piece of advice I would give is that if a port is an option, consider it seriously. I resisted one for half my treatment but it made life so much easier once I got it. I was scared of the minor surgery putting it in but it was nothing at all (and it cuts the time way down on administration of some meds).

    Best of luck to you. You’ve got this!

  • Burni
    Burni Member Posts: 20 Member
    #7

    You've got this! I agree with the others advice and allow your wife to fully know how your feeling, and have an active part.I successfully went through R-chop 2 years ago for DLBC stage 4.I also had 4 rounds of spinal chemo as a bump was growing on my forehead. For me staying as positive as I could and taking it one treatment at a time was helpful for me .My husband,children and my girlfriends took turns taking me to all my chemos and appointments .Even your little ones will be so happy to bring something to Daddy that he needs. Take care

  • VCooper
    VCooper Member Posts: 3 Member
    #8
    https://csn.cancer.org/discussion/326153/first-treatment-this-week-rchop-and-scared


  • VCooper
    VCooper Member Posts: 3 Member
    #9

    Hi Spam,

    I just joined this group a few minutes ago and saw your post. Hang in there. I am a female 78 years old, will be 79 in March, and completed 6 cycles of chemo plus Rituxan on December 3. I have Non-Hodgkins Follicular Lymphoma that was diagnosed 22 years ago, and never needed treatment until this past July. All of my treatments were in the hospital, and were given by continuous slow drip IV for 96 hours (4 days) every 3 weeks. I had no side effects, except for total fatigue, exhaustion, and weakness after each treatment. I was given prophylactic medications to prevent side effects. I was terrified in the beginning, but the treatments weren’t nearly as bad as I thought they were going to be.

    I think your wife would want you to be open and honest with her about every detail, since you are both in this together. Cancer treatment is a long haul, and you both are going to need to support each other. You will make it through this!! Good luck and God bless you and your family

  • Spam
    Spam Member Posts: 6 Member
    #10

    Thanks for all the posts- I have successfully completed 1/6th of my treatments.


    I appreciate the words of encouragement! Still haven't shared any fear feelings with my wife as they have all but dissipated. Super fatigue last week but feel "normal" now.

  • Izzy24
    Izzy24 Member Posts: 4 Member
    #11
    https://csn.cancer.org/discussion/326153/first-treatment-this-week-rchop-and-scared

    How are you?

  • Izzy24
    Izzy24 Member Posts: 4 Member
    #12

    I was diagnosed with Nodular Lymphocyte Predominant Hodgkin’s Lymphoma as well. Going for a second opinion. How are you feeling?

  • Spam
    Spam Member Posts: 6 Member
    #13
    https://csn.cancer.org/discussion/comment/1704747#Comment_1704747

    Hey Izzy24,

    I think it’s wise to get a second opinion, while both of the doctors I saw came to the same conclusions they both offered advice the other did not- for one ever since a young age I “played” with my lymph nodes by moving them around and showing friends etc… well for the first time in my life my second opinion doctor told me to not touch the lymph nodes as it encourages growth. Mine are enlarged under my jaw and I could move them to the outside of my jaw or lower on my neck - I have had many nodes removed and none of them came back cancerous until this last biopsy - I am glad you were able to discover this! My treatments have gone well I am half way done with treatments- I will say that I haven’t gone through a treatment cycle without catching a cold -two young kids and a teacher for a wife is not a good combination of staying healthy. Stay positive - this is not the end - you got this!

  • Izzy24
    Izzy24 Member Posts: 4 Member
    #14
    https://csn.cancer.org/discussion/comment/1704759#Comment_1704759

    Thank you for responding! So happy you are doing well. My lymph nodes are localized in the neck area. They have not wanted to do treatment as yet. I am not having any secondary symptoms at this time. How often is your treatment?

    https://csn.cancer.org/discussion/comment/1704759#Comment_1704759


  • Spam
    Spam Member Posts: 6 Member
    #15
    https://csn.cancer.org/discussion/comment/1704760#Comment_1704760

    I have a full day every 3 weeks. I also didn’t have any other symptoms and one opinion was to go through with treatment and one opinion was to wait. My first doctor explained that both options were viable but knowing what your health looks like now should be a determining factor- I am “young” and “healthy” now and I may not be in the same state in a year, 5 years, or 10 years down the road. In my research there’s about a 7% chance this can type of lymphoma can turn into something more aggressive and that was not a chance me or my wife wanted to take by holding off. I hope your second opinion provides you with the answers you are hoping for. As for chemo if it is in the cards for you my biggest piece of advice is to try and drink a gallon of water per day and make sure you walk- on my treatment week I aim and struggle to get 6,500 steps per day compared to the 11,000 steps on the following two weeks.

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