New Lymphoma: Nodular sclerosing Hodgkin lymphoma (NSHL)

Posted by melbishop @melbishop, Aug 9 10:08am

I’m new and just had a ct scan where they said I had a few enlarged lymph nodes and now have appointments with Surgery and Oncology…I’m starting to worry when I see all this stuff and don’t know what to expect

Hey @melbishop, welcome to Mayo Clinic Connect. I can understand that you're worried. A cancer diagnosis catapults you into unknown territory and on a journey you never thought you'd have to take. It can be helpful to connect with others who have been there to know what you might expect. While everyone is different, other patients can share their experiences and help you prepare.

First, let's start with you. Do you know what type of lymphoma you have? Where were the enlarged lymph nodes discovered?

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@colleenyoung

Hey @melbishop, welcome to Mayo Clinic Connect. I can understand that you're worried. A cancer diagnosis catapults you into unknown territory and on a journey you never thought you'd have to take. It can be helpful to connect with others who have been there to know what you might expect. While everyone is different, other patients can share their experiences and help you prepare.

First, let's start with you. Do you know what type of lymphoma you have? Where were the enlarged lymph nodes discovered?

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I have several enlarged lymph nodes down my aorta on both sides of my diaphragm and in pelvic area. They're doing a biopsy on one of the largest on it on the vena cava area in between my kidneys Monday then I meet with the Denver head of oncology the 31st. I'll know more then. Night sweats and massive chills, pins and needles skin issues have mellowed but I'm getting tired spells. Thanks for listening but I guess I'm still waiting on more information.

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@melbishop

I have several enlarged lymph nodes down my aorta on both sides of my diaphragm and in pelvic area. They're doing a biopsy on one of the largest on it on the vena cava area in between my kidneys Monday then I meet with the Denver head of oncology the 31st. I'll know more then. Night sweats and massive chills, pins and needles skin issues have mellowed but I'm getting tired spells. Thanks for listening but I guess I'm still waiting on more information.

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Well, I'm glad you found this support group early in your journey. Scroll down in this article to find a list of questions you might consider asking at your appointment.
– Lymphoma https://www.mayoclinic.org/diseases-conditions/lymphoma/diagnosis-treatment/drc-20352642

While they may not have the same type of lymphoma, I'd like to ask fellow member @sweede536 @1nan @grandpabob @mepowers to join this discussion to share their tips for preparing for your appointment. Mel, do you have any questions you'd like to ask fellow lymphoma survivors?

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@colleenyoung

Well, I'm glad you found this support group early in your journey. Scroll down in this article to find a list of questions you might consider asking at your appointment.
– Lymphoma https://www.mayoclinic.org/diseases-conditions/lymphoma/diagnosis-treatment/drc-20352642

While they may not have the same type of lymphoma, I'd like to ask fellow member @sweede536 @1nan @grandpabob @mepowers to join this discussion to share their tips for preparing for your appointment. Mel, do you have any questions you'd like to ask fellow lymphoma survivors?

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Hello Mel. So glad you are comfortable reaching out early in this medical journey. I am a long time survivor of another blood cancer, Multiple Myeloma. That suggests more medical appointments than I could ever guess. Colleen started you on a very important first step, and that is: arm yourself with information. That includes reading, listening to any available presentation, and talking with those with personal experience in any related form. My second suggestion is to always, always have someone with you at appointments who is equipped with a method to take notes and help you cover all those planned questions. I always asked the person with me, in my case my husband and a few times a daughter, to please ask their own questions during the appointment. At the end I always ask them if they have any last minute thoughts or questions. Many times my husband heard something I missed and vice versa. Is there any part of this that I can further clarify?

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Nancy is spot on about bringing someone with you. You can’t possibly absorb everything that is being told to you. If you aren’t a medical professional, there are so many new words that you don’t understand along with the emotional response to what you are being told. Another thing I would recommend is ensuring you have access to your medical portal. It will likely recap appointments and instructions. Also, there are lab results in there to review at your leisure. I wish you well @melbishop.

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Thanks you guys, went in for a biopsy yesterday so I'll know more soon

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@melbishop

Thanks you guys, went in for a biopsy yesterday so I'll know more soon

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Thank you for the update. I hope the procedure went well for you. Sometimes baby steps feel like giant leaps that help us feel a little more control over our circumstances. I wish you peace as you wait out the answer that points to the next turn in your path. We will be here to walk with you as needed and look forward to your next report. Nancy

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Had to get a new biopsy through the front side this time and results show "Nodular sclerosis Hodgkin lymphoma of lymph nodes of multiple regions (HCC) … at least stage 3
They gave me a chess port the day before yesterday and are going to start something called abvd chemo on the 8th.

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I don't know what I'm doing and I don't know what to expect all I know is that I'll get sick and most likely lose my hair. I already got in a fight with the surgical dressing the first night and ripped it off in my sleep, then put on the tegaderm tape dressing directly over the surgical site not knowing what I'm doing. I'll shower for the first time today and see how it goes.

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@melbishop

I don't know what I'm doing and I don't know what to expect all I know is that I'll get sick and most likely lose my hair. I already got in a fight with the surgical dressing the first night and ripped it off in my sleep, then put on the tegaderm tape dressing directly over the surgical site not knowing what I'm doing. I'll shower for the first time today and see how it goes.

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It seems like so much has happened in a very few weeks, and that might make it feel like you don’t truly have a handle on things. These uncharted waters can be very frightening until you have some self confidence about the decisions that you are making. I was wondering who you have with you for the appointments and procedures. What have they done to help you to this point? Is there anything more you need that wasn’t anticipated? Perhaps there are resources you need that we could help you find.
Nancy

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So, right now with the chest port installed and the firm diagnosis of stage 3/4, I want to know if anyone else gets this severe dry skin and pins and needles to the extent that I am and if there is any remedy.

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@melbishop – I had those symptoms when I was having Chemo. I used countless bottles of lotion to keep my skin moist, I found that baby lotions, non scented worked best. As far as pins and needles go, yes in my feet I still have some numbness that comes and goes.

So not sure if it was from anxiety or the treatments but none the less, I feel they were a symptom for me.

To a previous post, I am not familiar with the type of Chemo you have been prescribed so cannot relate to it.
Your providers should be able to provide you with a reasonable expectation of what types side effects you may get.

Do you have someone that will be helping you at home with your recovery?

All the best @melbishop

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@grandpabob

@melbishop – I had those symptoms when I was having Chemo. I used countless bottles of lotion to keep my skin moist, I found that baby lotions, non scented worked best. As far as pins and needles go, yes in my feet I still have some numbness that comes and goes.

So not sure if it was from anxiety or the treatments but none the less, I feel they were a symptom for me.

To a previous post, I am not familiar with the type of Chemo you have been prescribed so cannot relate to it.
Your providers should be able to provide you with a reasonable expectation of what types side effects you may get.

Do you have someone that will be helping you at home with your recovery?

All the best @melbishop

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I have extremely dry skin from various chemos. I am not familiar with the type of chemotherapy that you are having. There are prescription creams that you can use. I use one called HyloTopic. I also have the pins and need feeling all over my body…especially when I get hot.
I have non Hodgkins Lymphoma.
Has anyone experienced aching and skin sensitivity from the back of their knees to their posterior?

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I also was diagnosed with NHL, follicular
Grade 2-3, after originally diagnosed with CHL, stage 4-B. My port was attached to my upper arm because a neck port could not be installed at the time due to tissue obstruction. So my lymphoma case is unusual and complicated. As previously mentioned, I have responded well to bendamustine and rituxan, a monoclonal antibody.
There is a great deal of effective treatments for lymphoma, along with emerging clinical trials for lymphoma patients.
Best of recovery, health, and personal happiness to you.
Don

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@melbishop

So, right now with the chest port installed and the firm diagnosis of stage 3/4, I want to know if anyone else gets this severe dry skin and pins and needles to the extent that I am and if there is any remedy.

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@melbishop It seems that you have landed on two of the more common side effects of treatment. Even with my diagnosis different from yours, those two symptoms were there even when my treatments changed. You have gotten some good suggestions for dealing with dry skin issues. For what could possibly be neuropathy I suggest you might have conversation with your doctor and/or nurse team. If that symptom makes sense you might want to check out the Neuropathy discussions here at Mayo Clinic Connect. We have some excellent Mentors who help with the questions and conversations found there. Please let us know what you find that offers some help. And know that there is help.
Peace, Nancy

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