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Thread: First time poster - mom of Hodgkin's lymphoma patient

  1. #1
    Newbie New User
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    Apr 2019
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    First time poster - mom of Hodgkin's lymphoma patient

    Hi all,

    It took me some time to post in a cancer forum. I still have trouble feeling like I belong to such a thing. It still doesn't feel real - and yet it's not like he was diagnosed yesterday. My son was diagnosed December 10th, 2018 with Hodgkin's lymphoma. He has had four cycles of chemotherapy, and we have been told that the cancer is 96% gone. Which is good news right?

    Only they are worried about a spot on his lung and want to do a biopsy, so we aren't celebrating just yet. He just turned 16, and he wants his life to return to normal. We all need our lives to return to normal because we are just worn out. The city where he is treated is 5 hours away and we already had a busy life before this (his sister is very active and we have three horses and a couple of dogs). Psychologically, we are so, so worn out. Sounds silly complaining about such trivial matters, doesn't it? I guess that's also why I didn't post in here before. I feel I have no right to complain when so many are dealing with so much more.

    But now that the end is hopefully coming, I now worry about how things will unfold after... assuming he does not need further treatments, or only radiation now.

    He is a very competitive football player and was recruited to play for a provincial team, but he can't play until he is cleared, and it is looking less and less like that will happen (tryouts start this weekend). As a mom, I want to protect him, but football has been the primary motivating force for him to get better. Without football.... I don't know.

    Gosh, this was just supposed to be a quick intro. Well, anyway, thanks for having me. Going to read some other experiences now so maybe I can get some ideas of how to help my son get through this.

  2. #2
    Moderator Top User
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    Feb 2011
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    598
    I'm glad that you took this step to actively join the forum. I know it's a big deal to accept the fact that you're dealing with lymphoma - I suspect that most of us are wondering what the heck is going on from time to time, even as we are in the middle of treatment.

    In your son's case, the fact that you're close to done and apparently most of the way to remission is definitely a good thing. Sometimes a PET or CT scan will pick up dead tissue that has surrounding activity (to get rid of dead cells) which looks suspicious. I had quite a few dead nodes that took many months to dwindle away. So - it's good that your doctors are being careful and observant. It may be that follow up radiation is needed; for Hodgkin's it often is.

    Also, I'm sure that you're aware that Hodgkin's is the most easily cured of the lymphomas, with something like a 98% cure rate.

    As far as playing football - that's a tough call. It really depends on how resilient he is. Hodgkin's treatment is known for being very tough on the respiratory system, and long training sessions, etc., could be extremely tough on him. He will also have a depleted immune system for some time after treatment, and I'm not sure that spending lots of time in a sweaty locker room with a bunch of guys - many with cold or flu germs - would be wise. I would hate to disappoint your son, but I'd definitely take him for a frank discussion with the oncologist - and then the coach - to discuss your best options.

    Maybe even if he can't join the team itself, he could join in as a coach's assistant, statistician, or some other useful role that will make him feel a part of things? Or - channel that energy into some other sport or activity that may place fewer physical demands but greater creative or intellectual commitment. There is a wealth of opportunity for activities (I was in journalism, debate team, and other less sportsy stuff, myself).
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    1/2018: Remission continues (>7 years) Down to one checkup/year!

  3. #3
    Moderator Top User
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    Hi and a second welcome to the site, caring for a child who is going through treatment is tough in its own right, add to that trying to ensure family life continues for the rest of the family makes it so much harder and guilt can become an issue as you are pulled in many directions at the same time.
    I am from the UK and know here at the age of 15 a child is borderline between receiving the adult treatment which is ABVD or a different type which is given to children, it would help to know what his treatment has been today. Also did he have a scan after his second treatment and if so what did the scan reveal? I ask because as Defens has said it is possible for scar tissue to appear on a scan as an active area still, its called a false positive scan. it happened to me too at the end of my treatment and rather than have further treatment and discussing this with the consultant we agreed to watch and wait 3 months to see what happened and I had a further scan at that point and a final one 3 months later, these confirmed it was scar tissue and not active disease.
    so don't worry to much at this point and discuss with his consultant what the options are, the benefits of a new biopsy and the way forward, again just to give some reassurance I know a number of HL patients who have been in the same position as your son and in most cases it was scar tissue for them too.
    As for his football aspirations, he will need time to recover and the timing may not be ideal but is taking a year out an option if he struggles with his fitness?

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #4
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    Thanks for your replies @defens and @johnr.

    He had CT, PET and X-rays done right at the beginning (December), and again at the halfway point (after 2 cycles of chemo). The PET was completely clean at the halfway point, and the CT revealed a 63% reduction. After the 4th treatment, they did another CT and Xray. The CT showed 96% reduction. The thing about the spot on the lung is that they discussed it initially (even thought of doing a biopsy then, but decided against it) and felt it was probably unrelated. It didn't light up in the PET scan, and is very, very tiny. It doesn't look like the other cancerous masses. They think it is likely some scar tissue from a previous illness or something. But it hasn't gone away, nor has it changed much in size (they think it may have looked a little smaller in the final scan, but are not really sure because it's really so small). They are suggesting that if it were cancer, it would likely have responded to treatments like the rest of the masses did. My worry is that it might be a different (secondary?) cancer. But it's most likely nothing. Still, I'll feel better once we know the results of the biopsy.

    He is very focused on his football training, and I'm not sure how we should handle it to be honest. I agree though, and I have already asked his main oncologist to have a talk with him when we got for the biopsy. I think we need to manage expectations. But he is determined to try out for the team no matter what. Tomorrow is his first day of tryouts. There is nothing in the schedule he can't do since there is no contact tomorrow, just basic drills. He has the option to bench press 150, 185 or 200 and wanted to do 185, but my husband told him no. He was lifting 185 last year, but this year, he has only gotten up to 175 so far. My husband told him it's better to lift less. He went in his room and sulked for a while, and was out of sorts for the rest of the evening. This just gives you an idea of how important it is to him. I fear he is going to be crushed when he doesn't make the team. On the other hand, what if succeeds? And this is such a big motivation for him, I hate to think of the psychological blow of us telling him he can't at least try.

    Oh, and in terms of being exposed to germs, he has been in school for the entire duration of his treatments. He would only miss on chemo days, and sometimes on the 4th day after 3 days of chemo. He has been doing everything as usual, and we are certainly not an antiseptic environment since we live in the country, and have horses and dogs. Surprisingly, he never once got as much as the sniffles. Even with a suppressed immune system, and being in school every day with germs galore, he never got sick. So that would not be a reason for me to keep him from football. Really, I think he has done pretty well, and has shown great resilience. His weight has stayed pretty much the same, and he had minimal nausea. His biggest complaint was bone pain, but they told us that was probably the Neulasta (it stimulates bone marrow production I think).

    His team has been so supportive too. 12 guys shaved their heads publicly to show him their support. It has been truly incredible, and maybe that's why he wants to play so badly. But the coaches know he has cancer of course, and maybe they'll find a way to involve him. I have a feeling he won't want anything but an earned spot on the team though. He even refused his wish from the Children's wish foundation. His dream is to go see the Dallas Cowboys in Texas (we're in Canada), so we thought he'd like that as a wish, but he won't do it. He wants to go on his own terms someday. Not sure what to think of this, but as a mother, I have to respect it. He doesn't want to be a charity case. He hates being the "cancer guy" at school, but it has been good for him to get out and continue to socialize normally. I think he has been luckier than most in this regard.

  5. #5
    Senior User
    Join Date
    Sep 2016
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    310
    Hi there,
    I wanted to say hello as the mom of a son with Hodgkin Lymphoma, especially since there are very few people here dealing with HL. Although my son is older (24 when diagnosed) he is the same way about not wanting to be treated differently or special in any way. I admire your son's tenancity and understand that football is important to him and playing football is proof to him that things are back to normal. But I sure do understand how you are likely feeling about it also. We all know what a rough game football is. With our kids (even our adult children) we are always walking that thin line of protection/concern/wanting to help vs. their need for independence. It sure sounds like you are doing a great job with it all. Please reach out any time. - VMarie
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

 

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