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Hodgkin's lymphoma

America 1st

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Anyone have experience with this in a family member?

Looking for general insight into what I should expect for my wife with the chemo treatments and so on. Haven't had a family member get chemo recently and have heard things aren't as terrible as they used to be?

Any insights would be appreciated.
 

Nape

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I’m not familiar with that diagnosis but I would definitely reach out to Mark Price on tMB thread about cancer. I have his cell as he helped us through my fil’s ordeal. He is a huge advocate for the dewormer regimen that has helped so many people. If you need his contact I will send it to you.
 

Vermin00

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Anyone have experience with this in a family member?

Looking for general insight into what I should expect for my wife with the chemo treatments and so on. Haven't had a family member get chemo recently and have heard things aren't as terrible as they used to be?

Any insights would be appreciated.

couple thoughts and ?s, how old is your spouse and what part of the country do you live in, how do you feel about your oncologist, is that person experienced but also aware enough and really humble enough to ask questions and work as a team......at a high level- there is a treatment pathway but there can be nuance and complexity.....people like treating this because it is generally successful but at this point , that is just one measure of how well someone does managing this.....they have to consider things like fertility, possible impact of meds and radiation, adjustments for toxicity, impact on hormonal function, talking about options/risks and benefits......I am fairly certain this will work out well and that the disease will respond, the next level is getting patients through well and guiding them through the ups, downs and things that affect quality of life......this is one we feel we want to get absolutely right and damn near perfect because the treatments are generally very successful ..... sorry to hear about this man
 

America 1st

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couple thoughts and ?s, how old is your spouse and what part of the country do you live in, how do you feel about your oncologist, is that person experienced but also aware enough and really humble enough to ask questions and work as a team......at a high level- there is a treatment pathway but there can be nuance and complexity.....people like treating this because it is generally successful but at this point , that is just one measure of how well someone does managing this.....they have to consider things like fertility, possible impact of meds and radiation, adjustments for toxicity, impact on hormonal function, talking about options/risks and benefits......I am fairly certain this will work out well and that the disease will respond, the next level is getting patients through well and guiding them through the ups, downs and things that affect quality of life......this is one we feel we want to get absolutely right and damn near perfect because the treatments are generally very successful ..... sorry to hear about this man
30. Good blood draws (all normal ranges). Clean lung and heart scans.


Not sure what type because the guy who gave the results of the phone ( NE Ohio) was talking too quickly to her this morning.

PET in a couple days and hemotologist follow up in about 8 days.

Lymph nodes in pelvis, abdomen, and arm pit on left side (3) regions supposedly. Admoninal is small supposedly. Biopsy on pelvis node to confirm.
 

dragworm

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I have a friend who has lymphoma and just went through a course of treatments. I dont know it was Hodgkins type or not. He had several weeks of chemo, followed by a few sessions of radiation. It was in a small area and his doctors feel good that they likely got it. He is in the waiting state to see if it worked and is supposed to get scanned in a month. He lost all of his hair during chemo, and was always really tired. Hope your friend beats the cancer.
 

America 1st

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I have a friend who has lymphoma and just went through a course of treatments. I dont know it was Hodgkins type or not. He had several weeks of chemo, followed by a few sessions of radiation. It was in a small area and his doctors feel good that they likely got it. He is in the waiting state to see if it worked and is supposed to get scanned in a month. He lost all of his hair during chemo, and was always really tired. Hope your friend beats the cancer.
Thanks for the info.

I'm sorry to hear about your friend. Wishing him the best and will say a prayer.
 

Vermin00

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Neither at this point. Just got initial biopsy results this morning like I said.

I'm eager for this first PET scan so we know and can move forward.
Well- like I said, this is one that the meds can work.....there are really solid docs up there and some folks who focus on that stuff and have a handle on the subtle details......prayers up for your family ......
 

lucio

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Anyone have experience with this in a family member?

Looking for general insight into what I should expect for my wife with the chemo treatments and so on. Haven't had a family member get chemo recently and have heard things aren't as terrible as they used to be?

Any insights would be appreciated.
My best friend’s mom had it a few years back and survived. She was treated at the MD Anderson and although chemo and radiation is horrible she made it through.
My mom passed away almost three years ago from metastatic breast cancer after battling for 2 years.
 

America 1st

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Well- like I said, this is one that the meds can work.....there are really solid docs up there and some folks who focus on that stuff and have a handle on the subtle details......prayers up for your family ......
Sorry if that came across wrong. Didn't proof read and I realize I might have come across like a dick.

Very much appreciate your insight.
 

America 1st

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My best friend’s mom had it a few years back and survived. She was treated at the MD Anderson and although chemo and radiation is horrible she made it through.
My mom passed away almost three years ago from metastatic breast cancer after battling for 2 years.
I'm sorry to hear about your mom. At least she is in the Lord's embrace and much better off then us here.

Thanks for the info!
 

Vermin00

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Sorry if that came across wrong. Didn't proof read and I realize I might have come across like a dick.

Very much appreciate your insight.
Not at all man....no worries..... if you would like names or recs peripherally know some folks I would trust at the Clinic..... I’ve managed this before but I always loop in someone who focuses on this.....for the finer points.....I’m confident she’ll do great
 

Molon Labe

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I’m not familiar with that diagnosis but I would definitely reach out to Mark Price on tMB thread about cancer. I have his cell as he helped us through my fil’s ordeal. He is a huge advocate for the dewormer regimen that has helped so many people. If you need his contact I will send it to you.
Op, do not listen to this post. You might use ridiculous things like antifungals for dogs for rare or advanced cancers but hodgkins is one of the most treatable with a proven chemo regimen.
 

byrons

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Our oldest son, age 25, was diagnosed with stage 4 Hodgkins. We had a referral from a relative to a renowned cancer Doc at Abbott in Minneapolis luckily. He went through several layers of chemo and radiation and is doing well today at age 47. We are so fortunate. From what we understood at the time Hodgkins was a far better diagnosis than the regular lymphoma. The radiation therapy had an adverse affect on his thyroid but that can be handled with meds. We now have 3 grandkids and are extremely grateful for the treatment he received. We wish you and your wife the ABSOLUTE best.
 

Concrete Cowboy

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Had non hodgkin's 20 years ago. Maybe not relevant. Stage A1 or 1A or whatever. Did 3 rounds of chemo (chop) and then 6 weeks of radiation. I dont consider myself in remission but rather, cured.

Radiation was a bitch and my muscles are still sore today.

Chemo not so bad... lost every hair on my body except eyebrows... developed dark circles under my eyes and all I needed was a lightbulb in my mouth and I'd look like uncle fester.

What I tell others when they are faced with a cancer diagnosis is... your attitude is very important... dont think you are going to beat it... KNOW you are going to beat it.
 

byrons

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CC, your symptoms/effects sound like my son's. On a lighter note our son was starting a landscaping business at the time. He had started losing his hair partially but not completely. He said he was looking forward to the next customer that pissed him off so he could say 'you make me so mad I could pull my hair out'! And then do it. Like I said above he's now in his later 40s and doing well. We are blessed.
 

America 1st

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Our oldest son, age 25, was diagnosed with stage 4 Hodgkins. We had a referral from a relative to a renowned cancer Doc at Abbott in Minneapolis luckily. He went through several layers of chemo and radiation and is doing well today at age 47. We are so fortunate. From what we understood at the time Hodgkins was a far better diagnosis than the regular lymphoma. The radiation therapy had an adverse affect on his thyroid but that can be handled with meds. We now have 3 grandkids and are extremely grateful for the treatment he received. We wish you and your wife the ABSOLUTE best.
Bless your son and your whole family!

Thank you sooo much for the info!
 

America 1st

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Had non hodgkin's 20 years ago. Maybe not relevant. Stage A1 or 1A or whatever. Did 3 rounds of chemo (chop) and then 6 weeks of radiation. I dont consider myself in remission but rather, cured.

Radiation was a bitch and my muscles are still sore today.

Chemo not so bad... lost every hair on my body except eyebrows... developed dark circles under my eyes and all I needed was a lightbulb in my mouth and I'd look like uncle fester.

What I tell others when they are faced with a cancer diagnosis is... your attitude is very important... dont think you are going to beat it... KNOW you are going to beat it.
Bless you!

Thank you so much for sharing! I really appreciate your time!
 

America 1st

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Seems like good news. Appreciate all the kind words and words of wisdom.

Got confirmation of this earlier.

 
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my crazy baby mama had it about 15 years ago. She went through the treatments no major problem. Hasn't had any issues since then. She's about as crazy as they get so she liked all the attention she got when her hair fell out during chemo. Her hair has since grown back, and she is still crazy. They can cure cancer, but still can't cure crazy.
 

America 1st

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Bump.

We go to Cleveland Clinic on Monday for a 2nd before chemo.

What should I be asking? Planning on asking to be moved up to Cleveland Clinic for all care but what else?
 

Vermin00

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Bump.

We go to Cleveland Clinic on Monday for a 2nd before chemo.

What should I be asking? Planning on asking to be moved up to Cleveland Clinic for all care but what else?

1. The main cancer building down there is truly impressive, hard to describe the inherent efficiency, patient centered design, subtle features to make up a really phenomenal center. They went hard after making a damn near perfect center for the size of program they have there
2. There should be high degree of alignment between the recommended regimens, without too much info- I suspect the letters ABVD have been thrown about but it may be different pending subtype. In any case, I wouldn’t think the starting plan should vary much, if it does- I’d generally go with them
3. Pending on where you live, they may be able to accommodate the plan more local to you but still leveraging main campus expertise, generally works well and that team is great with communication, on the other hand if you are close to downtown you are in great shape there
4. If things like long term toxicity, fertility questions, risks for secondary malignancies haven’t come up or been addressed they really should as the patient here is young and these are huge parts of how quality management of this particular disease is measured....long term risks for cardiac, pulmonary and hematologic issues should be addressed because the value of the expertise is really understanding the nuance and guide toward the optimization of outcome on all levels, I like the clinic in this particular space because they have a mature set of support programs for these issues like cardio oncology and survivorship
5. Not only should the regimens of treatment be the same, there should be similar notes about supportive medicines and very importantantly timing of follow up PET scans, again I like the clinic here as well, as the follow up studies are often pivotal in management decisions so whoever reads them has to be experienced
6. Hopefully you get no grief from the person who saw you initially, often I’ll hear from people, they did the same thing anyway- that ultimately may be true, but it’s like boating on Erie, doesn’t take much to be out there in a 3 mile an hour southern wind but they are prepared and experienced to get through the off hand chance the wind flips to 10-12 out of the north east.....
7. While you never know and cannot guarantee an individuals experience- that team in Cleveland is generally bright, communicate well, thoughtful and focused.....they also are dedicated specialists that only focus on lymphoma and will run cases by each other as well- again , huge benefit, I run stuff by them fairly frequently
Best of Luck, Prayers up
 

America 1st

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Sorry to hear the news but glad it’s very treatable. Just said a prayer for your wife and family.
1. The main cancer building down there is truly impressive, hard to describe the inherent efficiency, patient centered design, subtle features to make up a really phenomenal center. They went hard after making a damn near perfect center for the size of program they have there
2. There should be high degree of alignment between the recommended regimens, without too much info- I suspect the letters ABVD have been thrown about but it may be different pending subtype. In any case, I wouldn’t think the starting plan should vary much, if it does- I’d generally go with them
3. Pending on where you live, they may be able to accommodate the plan more local to you but still leveraging main campus expertise, generally works well and that team is great with communication, on the other hand if you are close to downtown you are in great shape there
4. If things like long term toxicity, fertility questions, risks for secondary malignancies haven’t come up or been addressed they really should as the patient here is young and these are huge parts of how quality management of this particular disease is measured....long term risks for cardiac, pulmonary and hematologic issues should be addressed because the value of the expertise is really understanding the nuance and guide toward the optimization of outcome on all levels, I like the clinic in this particular space because they have a mature set of support programs for these issues like cardio oncology and survivorship
5. Not only should the regimens of treatment be the same, there should be similar notes about supportive medicines and very importantantly timing of follow up PET scans, again I like the clinic here as well, as the follow up studies are often pivotal in management decisions so whoever reads them has to be experienced
6. Hopefully you get no grief from the person who saw you initially, often I’ll hear from people, they did the same thing anyway- that ultimately may be true, but it’s like boating on Erie, doesn’t take much to be out there in a 3 mile an hour southern wind but they are prepared and experienced to get through the off hand chance the wind flips to 10-12 out of the north east.....
7. While you never know and cannot guarantee an individuals experience- that team in Cleveland is generally bright, communicate well, thoughtful and focused.....they also are dedicated specialists that only focus on lymphoma and will run cases by each other as well- again , huge benefit, I run stuff by them fairly frequently
Best of Luck, Prayers up
Thank you both so much!
 

Vermin00

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Oh Dude - that’s perfect......people love that guy and I know him well, I’d see him myself, send my wife or any family member.....bright guy, relates well and is down to earth.... he will think it all through , super thoughtful and will have the plans well laid out.....again - that would be my first choice in Ohio with one of the folks at OSU right up there.....people all over do call him for opinions- you are in good hands there.....
 

America 1st

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Oh Dude - that’s perfect......people love that guy and I know him well, I’d see him myself, send my wife or any family member.....bright guy, relates well and is down to earth.... he will think it all through , super thoughtful and will have the plans well laid out.....again - that would be my first choice in Ohio with one of the folks at OSU right up there.....people all over do call him for opinions- you are in good hands there.....
This makes me feel MUCH better!

How hard would it be to get her transferred to him for this whole process?
 

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