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Anyone here have or had Hodgkin's Lymphoma? (1 Viewer)

Run It Up

Run It Up

Footballguy
The people that follow the healthcare reform threads may or may not have seen my handful of posts about how I've been avoiding going to the doctor, mostly because the only thing I'm more afraid of than death is being in debt - but also because I'm stupid.

Well on the 24th I started having some chest pain and shortness of breath and thought it might be symptoms of an oncoming heart attack so I went to the ER after being unable to get an appointment anywhere cause I don't have insurance.

They knew within 45 minutes that I had lymphoma but it took a little more than a week, this morning to get the official results and sure enough I have Hodgkin's Lymphoma. I'm 24, this coming semester I was going to graduate, saturday is my 25th birthday.

Just curious if anyone else has had an experience with this personally as it appears to be a very common cancer. I won't know more until tomorrow when I speak to my oncologist.

Update: #### cancer, just #### it.

 
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The only person I know who has had it has now been cancer-free for 12 years. Best wishes to you.

 
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I'm probably going to get a lot of strife for this but here goes.

1. No more sugar, sugar feeds cancer, no diet soda either or any other product that contains Aspartame, chewing gum etc.

2. Get yourself Vitamin B17. Go online and do your research. My mom had this in the late 60's, this is how she cured herself.

3. Get yourself some Nigella Sativa to help your overall health. Use the Google.

4. Oxygenate your body, exercise, take oxygen from a tank, get into a hyperbaric chamber if you can. Oxygen kills cancer.

5. Go to a Pharmacy and get yourself some Ph Strips, test your Ph, are you acidic or alkaline? Make your body alkaline, use the Google to help you.

5. Realize that in the USA the AMA and the FDA are not looking out for your best interests. There are at least 40 something cures, not treatments, cures for all different types of cancer used outside of this Country. In Italy there is a doctor curing cancer with pharmaceutical grade baking soda, yes baking soda. Google it. You can't patent baking soda hence you can't make any money curing people with it. That's why you don't see it here, we don't cure we only treat and we make sure the treatment is lengthy and expensive because its all about money. I can't tell you what to do but please do some heavy research before you decide what path you're going to go down. Don't just take what one Doctor tells you as gospel, they are mechanics pure and simple. There are great mechanics who will fix your car and there are ones who's goal is to make you a repeat customer by F'ing your car up in one dept. when they're 'fixing' something else. There are 9 doctors in my family by the way and all 9 of them after my schooling them now treat MRSA with Oregano Oil and Nigella Sativa because it works. What I'm saying is get a few opinions, do your research and listen to your body it will show you the way.

 
Run It Up said:
this coming semester I was going to graduate
Click to expand...
First off, I terribly, terribly sorry to hear about what you're going through. Words can not express....

I'd like to know, though, about the above. You say you were going to graduate. Please don't let this be the reason.

A close family member of mine is dealing with this, and has done for for many years and he continues to live a relatively normal life which up until recently included running his own business (he retired). I don't have specific advice, other than to do as much homework as you can about the situation and come to your own decision about the treatment you want to receive.

 
I'm so sorry to hear the news, but don't fret, fight! Sending prayers and positive thoughts your way.

 
best of luck to you. do educate yourself and try to have someone act as your healthcare advocate if at all possible. If you don’t have someone do act in that role do it yourself. You need to be strong with doctors and understand treatments and options.

And Happy Birthday to you.

 
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matttyl said:
Run It Up said:
this coming semester I was going to graduate
Click to expand...
First off, I terribly, terribly sorry to hear about what you're going through. Words can not express....

I'd like to know, though, about the above. You say you were going to graduate. Please don't let this be the reason.

A close family member of mine is dealing with this, and has done for for many years and he continues to live a relatively normal life which up until recently included running his own business (he retired). I don't have specific advice, other than to do as much homework as you can about the situation and come to your own decision about the treatment you want to receive.
Click to expand...
I'm planning on beating this, I'm planning on finishing school but what little I do know is that they will aggressively be treating this I have surgery on the 5th to put a port into one of my major arteries for the chemo. I have terrible anxiety and it peaks during the semester, I made the decision to take at least this semester off for that reason and that I also shouldn't surround myself with germ filled people while I will have a reduced immune system courtesy of chemotherapy.

Thanks for all the good thoughts, I'm holding up pretty well - that may change tomorrow when I get the specifics of where I'm at.

I've been trying to avoid scaring myself with the numbers, but everything I have read has been incredibly promising.

 
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Run It Up said:
matttyl said:
Run It Up said:
this coming semester I was going to graduate
Click to expand...
First off, I terribly, terribly sorry to hear about what you're going through. Words can not express....I'd like to know, though, about the above. You say you were going to graduate. Please don't let this be the reason.

A close family member of mine is dealing with this, and has done for for many years and he continues to live a relatively normal life which up until recently included running his own business (he retired). I don't have specific advice, other than to do as much homework as you can about the situation and come to your own decision about the treatment you want to receive.
Click to expand...
I'm planning on beating this, I'm planning on finishing school but what little I do know is that they will aggressively be treating this I have surgery on the 5th to put a port into one of my major arteries for the chemo. I have terrible anxiety and it peaks during the semester, I made the decision to take at least this semester off for that reason and that I also shouldn't surround myself with germ filled people while I will have a reduced immune system courtesy of chemotherapy.Thanks for all the good thoughts, I'm holding up pretty well - that may change tomorrow when I get the specifics of where I'm at.

I've been trying to avoid scaring myself with the numbers, but everything I have read has been incredibly promising.
Click to expand...
No one likes surgery, but having a port for your chemo treatments is a bunch easier than having to find a vein every time you go in. Do you know if it's going to be a portocath on your chest, or a PICC line in your arm? There are pros and cons to each.

 
One thing that I was discussing with my doctor the other day was a ketogenic diet. It turns out that both regular cells and cancer cells thrive on glucose, but only normal cells can use ketones, not cancer cells. If you go full keto, the cancer cells can't grow. It's not necessarily a cure, but I saw a study that said it might be useful prep for chemo.

 
bigbottom said:
Run It Up said:
matttyl said:
Run It Up said:
this coming semester I was going to graduate
Click to expand...
First off, I terribly, terribly sorry to hear about what you're going through. Words can not express....I'd like to know, though, about the above. You say you were going to graduate. Please don't let this be the reason.

A close family member of mine is dealing with this, and has done for for many years and he continues to live a relatively normal life which up until recently included running his own business (he retired). I don't have specific advice, other than to do as much homework as you can about the situation and come to your own decision about the treatment you want to receive.
Click to expand...
I'm planning on beating this, I'm planning on finishing school but what little I do know is that they will aggressively be treating this I have surgery on the 5th to put a port into one of my major arteries for the chemo. I have terrible anxiety and it peaks during the semester, I made the decision to take at least this semester off for that reason and that I also shouldn't surround myself with germ filled people while I will have a reduced immune system courtesy of chemotherapy.Thanks for all the good thoughts, I'm holding up pretty well - that may change tomorrow when I get the specifics of where I'm at.

I've been trying to avoid scaring myself with the numbers, but everything I have read has been incredibly promising.
Click to expand...
No one likes surgery, but having a port for your chemo treatments is a bunch easier than having to find a vein every time you go in. Do you know if it's going to be a portocath on your chest, or a PICC line in your arm? There are pros and cons to each.
Click to expand...
The reason I don't know the details is I found out the results to my tests a day early at my checkup with my surgeon, but he is a great guy and will be doing my port also. He prefers to do it though the collarbone (chest I suppose?)

I was super fortunate to land both the most highly rated oncologist in town and the most highly rated surgeon in town - with no insurance.

 
The only person I know with this survives and is cancer free. You will beat this. Positive attitude and support around you is very important. I'd look into what Dr. Gobbler is saying. It cannot hurt and is probably more right than wrong.

Before the getting better I think the most important thing is to get set spiritually. I believe that Jesus Christ is my Lord and Savior and He died for me and you! Jesus really lived and died and rose again. I'll pray for you. God Bless

 
I'm sorry you have to go through this challenge brother, and my thoughts and prayers are with you. Of all the cancers one could get, Hodgkin's Lymphoma typically has the highest cure rate. The fact that you are so young only tips the odds further in your favor. If they caught this relatively early your prognosis is great. Even late stage Hodgkin's Lymphoma can be cured.

I recommend you get educated. Patientslikeme.com is a great resource to learn from a bunch of other people with your condition. What worked, what didn't, outcomes, etc.

 
RustyFA4 said:
The only person I know with this survives and is cancer free. You will beat this. Positive attitude and support around you is very important. I'd look into what Dr. Gobbler is saying. It cannot hurt and is probably more right than wrong.

Before the getting better I think the most important thing is to get set spiritually. I believe that Jesus Christ is my Lord and Savior and He died for me and you! Jesus really lived and died and rose again. I'll pray for you. God Bless
Click to expand...
I appreciate your kind words and prayers, but I am not a spiritual person. I'm very fortunate to have a two great moms and the best grandmother and brother in the world.

Judge Smails said:
I'm sorry you have to go through this challenge brother, and my thoughts and prayers are with you. Of all the cancers one could get, Hodgkin's Lymphoma typically has the highest cure rate. The fact that you are so young only tips the odds further in your favor. If they caught this relatively early your prognosis is great. Even late stage Hodgkin's Lymphoma can be cured.

I recommend you get educated. Patientslikeme.com is a great resource to learn from a bunch of other people with your condition. What worked, what didn't, outcomes, etc.
Click to expand...
I'll check it out tomorrow for sure after I know all the details, gonna be a long day tomorrow.

 
About to pass out, I've been trying to put together a list of questions to ask my oncologist but I'm having trouble focusing anyone have any ideas of what I should ask?

So far all I have are diet, exercise and specific things about the cancer itself - causes, symptoms, etc.

 
Run It Up said:
About to pass out, I've been trying to put together a list of questions to ask my oncologist but I'm having trouble focusing anyone have any ideas of what I should ask?

So far all I have are diet, exercise and specific things about the cancer itself - causes, symptoms, etc

Your doctor will let you know the stage, treatment plans, etc. There is SO much info on the innerwebs with webMD, Mayo Clinic, etc that you don't have to rely on your doctor to educate you.. I'm sure some of the top cnacer facilities like MD Anderson and City of Hope have websites with a ton of information as well. Get educated yourself. One poster had recommendations about alternative treatments etc that you may want to consider.
Click to expand...
 
I wasn't at your age either. Just t he same I'll pray for you and hope you come around. Know you have people you don't know thinking about you. You will beat this.

 
Run It Up said:
bigbottom said:
Run It Up said:
matttyl said:
Run It Up said:
this coming semester I was going to graduate
Click to expand...
First off, I terribly, terribly sorry to hear about what you're going through. Words can not express....I'd like to know, though, about the above. You say you were going to graduate. Please don't let this be the reason.

A close family member of mine is dealing with this, and has done for for many years and he continues to live a relatively normal life which up until recently included running his own business (he retired). I don't have specific advice, other than to do as much homework as you can about the situation and come to your own decision about the treatment you want to receive.
Click to expand...
I'm planning on beating this, I'm planning on finishing school but what little I do know is that they will aggressively be treating this I have surgery on the 5th to put a port into one of my major arteries for the chemo. I have terrible anxiety and it peaks during the semester, I made the decision to take at least this semester off for that reason and that I also shouldn't surround myself with germ filled people while I will have a reduced immune system courtesy of chemotherapy.Thanks for all the good thoughts, I'm holding up pretty well - that may change tomorrow when I get the specifics of where I'm at.

I've been trying to avoid scaring myself with the numbers, but everything I have read has been incredibly promising.
Click to expand...
No one likes surgery, but having a port for your chemo treatments is a bunch easier than having to find a vein every time you go in. Do you know if it's going to be a portocath on your chest, or a PICC line in your arm? There are pros and cons to each.
Click to expand...
The reason I don't know the details is I found out the results to my tests a day early at my checkup with my surgeon, but he is a great guy and will be doing my port also. He prefers to do it though the collarbone (chest I suppose?)

I was super fortunate to land both the most highly rated oncologist in town and the most highly rated surgeon in town - with no insurance.
Click to expand...
Wait, I thought people with no I surface are lying dead in the street? Joking aside I wish u the best, what is your first name so I can add you to my families nightly prayers.

 
Dr. Gobbler said:
I'm probably going to get a lot of strife for this but here goes.

1. No more sugar, sugar feeds cancer, no diet soda either or any other product that contains Aspartame, chewing gum etc.

2. Get yourself Vitamin B17. Go online and do your research. My mom had this in the late 60's, this is how she cured herself.

3. Get yourself some Nigella Sativa to help your overall health. Use the Google.

4. Oxygenate your body, exercise, take oxygen from a tank, get into a hyperbaric chamber if you can. Oxygen kills cancer.

5. Go to a Pharmacy and get yourself some Ph Strips, test your Ph, are you acidic or alkaline? Make your body alkaline, use the Google to help you.

5. Realize that in the USA the AMA and the FDA are not looking out for your best interests. There are at least 40 something cures, not treatments, cures for all different types of cancer used outside of this Country. In Italy there is a doctor curing cancer with pharmaceutical grade baking soda, yes baking soda. Google it. You can't patent baking soda hence you can't make any money curing people with it. That's why you don't see it here, we don't cure we only treat and we make sure the treatment is lengthy and expensive because its all about money. I can't tell you what to do but please do some heavy research before you decide what path you're going to go down. Don't just take what one Doctor tells you as gospel, they are mechanics pure and simple. There are great mechanics who will fix your car and there are ones who's goal is to make you a repeat customer by F'ing your car up in one dept. when they're 'fixing' something else. There are 9 doctors in my family by the way and all 9 of them after my schooling them now treat MRSA with Oregano Oil and Nigella Sativa because it works. What I'm saying is get a few opinions, do your research and listen to your body it will show you the way.
Click to expand...
Excellent post and also check out the documentary Foodmatters. You can get rid of it. Good luck.

 
One of my best friends has been dealing with this for over 15 years. Got a stem cell 2 years ago and got a clean bill of health this past year. Good luck, you can beat it.

 
This is definitely a beatable cancer, good luck to you.

I am not sure about what Dr. Gobbler says but I do know that you need to be very careful with B-17, it can be very toxic.

 
boots11234 said:
Wait, I thought people with no I surface are lying dead in the street? Joking aside I wish u the best, what is your first name so I can add you to my families nightly prayers.
Click to expand...
I'm fortunate that one of the two hospitals in town is non-profit that has a financial assistance program that will reduce my medical bills by ~99%, not everyone is so fortunate.

Thanks again for all the kind words, appointment with my oncologist in 30 minutes to find out the specifics.

 
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Sorry to hear this RIU. An ex-GF of mine got this just after 40 and beat it completely. Round up whatever support you can, and take good care of yourself.

 
So I have great news for those concerned; the rare form of Hodgkin's I have is apparently Stage-3a of one of the better forms of Hodgkin's to have. Its called Lymphocyte-Predominant Hodgekin's Disease.

My oncologist recommended I don't start out with chemotherapy and instead take a new drug that has upwards of 90% success rate with only 33% remission, but if it begins to spread can transition into both chemo and the drug. But he wants to get a specialists opinion, fortunately I live in Missouri and one of the worlds leading specialists for this specific kind Hodgkin's works out of St. Louis, so he is referring me to her for a second opinion on treatment and we will go from there. So for now, I won't be getting a port put in for chemo.

Overall, compared to showing up at the ER, waiting half a week for surgery then waiting a week for the diagnosis this is great news. We went over my labs and scans, despite being obese and having cancer I'm surprisingly healthy, my oncologist believes I may have had this for as long as 10 years.

 
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Drug sounds better than Drug + Chemo. Hope you get good news from the specialist (and can get in to see her soon).

 
Small update:

Had to jump through hoops to get into a specialist for a consult even though I was referred and supposedly fast tracked - they literally wouldn't even give me an appointment date until they had copies of my denied SSI and Medicaid forms - which my doctor was pissed about which stressed me out a great deal.

After a trip to STL to meet with the specialist overall got a bunch of good news and a little bit of bad - could have been worse though.

Apparently the form of cancer I have is not only a rare for of Hodgkin's it also presented itself in a rare manner, it normally only presents in one portion of the body but for me, they believe it began at approximately the same time in several, base of my neck, below my arms, in my chest, above my spleen and my pelvis.

My doctor originally wanted to put me on a drug that has been really successful and avoid chemo, cause oddly enough this form of cancer rarely kills people but the complications presented from radiation or chemo treatment are more likely to kill a person than the cancer itself. The specialist disagreed with my doctor and wants to start me on Chemo and the drug, called Ritxuximab. The treatment supposedly has a 90+% chance of causing it to go into remission, but apparently this cancer has an incredibly high chance of coming out of remission, so I will have to go to the doctor every 3 months for like 5 years and then every 6 for the rest of my life - thats the bad news. Fortunately people that have come out of remission have had just as much success with the treatment after coming out of remission.

In all, this is the best news ive gotten since all this bull#### started and I'm just thrilled to have a plan, been hurrying up and waiting since a week before my birthday when I went to the ER. For those who were curious thats where I'm at. Gonna need to start a hat collection.

 
Run It Up said:
Small update:

Had to jump through hoops to get into a specialist for a consult even though I was referred and supposedly fast tracked - they literally wouldn't even give me an appointment date until they had copies of my denied SSI and Medicaid forms - which my doctor was pissed about which stressed me out a great deal.

After a trip to STL to meet with the specialist overall got a bunch of good news and a little bit of bad - could have been worse though.

Apparently the form of cancer I have is not only a rare for of Hodgkin's it also presented itself in a rare manner, it normally only presents in one portion of the body but for me, they believe it began at approximately the same time in several, base of my neck, below my arms, in my chest, above my spleen and my pelvis.

My doctor originally wanted to put me on a drug that has been really successful and avoid chemo, cause oddly enough this form of cancer rarely kills people but the complications presented from radiation or chemo treatment are more likely to kill a person than the cancer itself. The specialist disagreed with my doctor and wants to start me on Chemo and the drug, called Ritxuximab. The treatment supposedly has a 90+% chance of causing it to go into remission, but apparently this cancer has an incredibly high chance of coming out of remission, so I will have to go to the doctor every 3 months for like 5 years and then every 6 for the rest of my life - thats the bad news. Fortunately people that have come out of remission have had just as much success with the treatment after coming out of remission.

In all, this is the best news ive gotten since all this bull#### started and I'm just thrilled to have a plan, been hurrying up and waiting since a week before my birthday when I went to the ER. For those who were curious thats where I'm at. Gonna need to start a hat collection.
Click to expand...
Great to hear some good news.I wish you all the best.
 
Run It Up said:
Small update:

Had to jump through hoops to get into a specialist for a consult even though I was referred and supposedly fast tracked - they literally wouldn't even give me an appointment date until they had copies of my denied SSI and Medicaid forms - which my doctor was pissed about which stressed me out a great deal.

After a trip to STL to meet with the specialist overall got a bunch of good news and a little bit of bad - could have been worse though.

Apparently the form of cancer I have is not only a rare for of Hodgkin's it also presented itself in a rare manner, it normally only presents in one portion of the body but for me, they believe it began at approximately the same time in several, base of my neck, below my arms, in my chest, above my spleen and my pelvis.

My doctor originally wanted to put me on a drug that has been really successful and avoid chemo, cause oddly enough this form of cancer rarely kills people but the complications presented from radiation or chemo treatment are more likely to kill a person than the cancer itself. The specialist disagreed with my doctor and wants to start me on Chemo and the drug, called Ritxuximab. The treatment supposedly has a 90+% chance of causing it to go into remission, but apparently this cancer has an incredibly high chance of coming out of remission, so I will have to go to the doctor every 3 months for like 5 years and then every 6 for the rest of my life - thats the bad news. Fortunately people that have come out of remission have had just as much success with the treatment after coming out of remission.

In all, this is the best news ive gotten since all this bull#### started and I'm just thrilled to have a plan, been hurrying up and waiting since a week before my birthday when I went to the ER. For those who were curious thats where I'm at. Gonna need to start a hat collection.
Click to expand...
Glad to hear that you got some good news and have a plan. Stay positive and work the plan. And people are going to want to help. Tell them how, and LET THEM.

 
My girlfriend had it. Stage 4. She went to the doctor complaining of back issues and they found it. After all of her treatments, she has now been cancer free for over 6 years. Good luck and just know that you can beat it.

 
Glad to hear you've got some good news in all of this.

PM me if you'd like me to mail you some hats, I'd be glad to.

 
Kick it's butt Run it up! Some very smart folks already posted way more than I can even pretend to know, so I'll just keep you in my thoughts and know you're in great hands here with plenty of wisdom. Knock it out!

 
General Malaise said:
Kick it's butt Run it up! Some very smart folks already posted way more than I can even pretend to know, so I'll just keep you in my thoughts and know you're in great hands here with plenty of wisdom. Knock it out!
Click to expand...
What are you doing? I already posted for us on this thread.

 
Had Rituximab (brand name Rituxan) before.

The first infusion was a little rough, but after that it's a piece of cake. Just be sure to let the nurse know if you get light headed or need a blanket due to chills & cold sweats. They can slow down or stop the infusion until you are ready to get more.

I know you mentioned that the hospital will reduce your bills, check to see if that includes the Rituxan and whatever other meds you may need and not just the cost of in-patient stuff. Rituxan is ridiculously expensive, and I am pretty sure they also have assistance for people without insurance. I think they made enough off me alone that they could provide it for cheap to a bunch of people and still have a nice profit. Not meaning to rant about it, that stuff was a lifesaver.

 
bigbottom said:
Run It Up said:
Small update:

Had to jump through hoops to get into a specialist for a consult even though I was referred and supposedly fast tracked - they literally wouldn't even give me an appointment date until they had copies of my denied SSI and Medicaid forms - which my doctor was pissed about which stressed me out a great deal.

After a trip to STL to meet with the specialist overall got a bunch of good news and a little bit of bad - could have been worse though.

Apparently the form of cancer I have is not only a rare for of Hodgkin's it also presented itself in a rare manner, it normally only presents in one portion of the body but for me, they believe it began at approximately the same time in several, base of my neck, below my arms, in my chest, above my spleen and my pelvis.

My doctor originally wanted to put me on a drug that has been really successful and avoid chemo, cause oddly enough this form of cancer rarely kills people but the complications presented from radiation or chemo treatment are more likely to kill a person than the cancer itself. The specialist disagreed with my doctor and wants to start me on Chemo and the drug, called Ritxuximab. The treatment supposedly has a 90+% chance of causing it to go into remission, but apparently this cancer has an incredibly high chance of coming out of remission, so I will have to go to the doctor every 3 months for like 5 years and then every 6 for the rest of my life - thats the bad news. Fortunately people that have come out of remission have had just as much success with the treatment after coming out of remission.

In all, this is the best news ive gotten since all this bull#### started and I'm just thrilled to have a plan, been hurrying up and waiting since a week before my birthday when I went to the ER. For those who were curious thats where I'm at. Gonna need to start a hat collection.
Click to expand...
Glad to hear that you got some good news and have a plan. Stay positive and work the plan. And people are going to want to help. Tell them how, and LET THEM.
Click to expand...
:goodposting:

 
Willy said:
Had Rituximab (brand name Rituxan) before.

The first infusion was a little rough, but after that it's a piece of cake. Just be sure to let the nurse know if you get light headed or need a blanket due to chills & cold sweats. They can slow down or stop the infusion until you are ready to get more.

I know you mentioned that the hospital will reduce your bills, check to see if that includes the Rituxan and whatever other meds you may need and not just the cost of in-patient stuff. Rituxan is ridiculously expensive, and I am pretty sure they also have assistance for people without insurance. I think they made enough off me alone that they could provide it for cheap to a bunch of people and still have a nice profit. Not meaning to rant about it, that stuff was a lifesaver.
Click to expand...
Haven't been accept for my financial assistance through the hospital yet, but I should - so I don't know the specifics yet. My mom was accepted when they thought she had cancer a year ago and she had an income at that time.

Until last month I was a student with no income. I was told to also check with the Leukemia and Lymphoma Society because apparently they provide a lot of financial assistance to patients receiving care.

Did you have just the Rituxan itself, or did you receive it with Chemo as well?

 
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Had surgery today to get my chemo port implanted. Was not fun to say the least, I was led to believe it was a piece of cake procedure.

They believe I didn't need to be put under and only needed to be lightly sedated. Well I wake up an hour and half after the procedure in incredible pain, to find out I was fighting my surgeon during surgery the words 'violently' and 'thrashing' were thrown around. Apparently sedation isn't very effective on me. ####ty way to learn that lesson.

I begin treatment next monday.

 
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