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metastatic lymphoma


unsub2O17
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Three weeks ago I was diagnosed with an aggressive form of metastatic lymphoma (NOT HIV). I have had my first round of intense chemotherapy, and I'm feeling pretty good. I have a good prognosis. The thought occurred to me that members of this Forum might find it interesting and helpful if I posted from time to time about what I'm going through. Do you think that this is a good idea or would it just be maudlin? As I've said, I'm feeling pretty good, and I'm not at all sorry for myself. I have every expectation of resuming my "active" participation in this Forum when the time is right. So, what do you gents think? I know it's heavy, and, maybe, should just be kept private. But, I don't mind if you don't.

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Getting your thoughts and feelings out to a listener are as important to getting cancer out of you as the chemo is to physically getting the cancer out of you. Post frequently and intensely.

 

Well spoken ISC.......

 

We are here to support you Unsub, lend an ear, and perhaps give some advice. Good luck, and I am glad that you came forward with this.

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As i am sure you have discovered, lymphoma covers a broad spectrum of cancers of the lymph cells and as a result of the diversity of cell types, they have a very variable prognosis. I wish you well in this most trying time and I encourage you to use this forum in any way you see fit to help in your treatment and recovery. Many of us here, will in turn , do whatever we can do to help support you. Sometimes friends and family, in an effort to be supportive and because of their own fears for your health, will not speak to you frankly and will not let you express your own concerns. So unsub, let us help you and I am sure by doing so, you will many of the posters here.

There was a poster here ncm2169, who posted here all during an illness. His insights into his life and the real possiblity of his death, have helped me live my life more openly and more productively. So please post, let us help you and help us by doing so.

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Thank you all. For now, some background. I was perfectly healthy until 3 weeks ago. Overnight this huge neck mass--sore and restrictive appeared. I had so many tests so fast--ultrasound, biopsy, bone marrow biopsy, PET, MUGA scan (for heart health). I got my first dose of chemo. within 3 weeks of the appearance of the mass. The mass is gone, and I'm feeling tired but no nausea or diarrhea. Good appetite. I had prided myself on my weight. Now, I HAVE to gain about 40 lbs. Hospitals suck and the food is inedible, but most of my chemo can be done as an outpatient. I have a stage 4, but, because it's so fast growing, it's also particularly susceptible to the chemo. So, while my life is on hold for 6 months, there does seem to be a payoff coming.

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First and foremost, my thoughts are with you. I hope for a speedy and full recovery. Second, I would be interested in hearing about lymphoma and the process you are going through to treat it. While a TON of information can be had thanks to the Internet, it is often difficult to discern useful information from noise. First-hand is best hand, in my opinion.

 

Here's to a rapid recovery!

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More positive thoughts heading your way. I'd be happy to read, and in fact look foreword to, your future posts. I hope that your sharing with us helps you feel like you're owing your treatment and hopefully that gives a level of serenity that you will most likely need to fully recover.

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People have different tolerances for revealing their private medical business or reading about someone else's illness. The great thing about a forum like this is that you can say whatever you are comfortable saying, and others can choose to read it or not. You will certainly find support from well-wishers here, and no matter what readers some might think to themselves, I doubt anyone will be boorish enough to trash you as maudlin. So by all means post whatever you want. Good luck with your treatment!

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The treatment for lymphoma has been around for 35 years. It used to be called "CHOP" for the four main chemotherapy agents used. Then, another one was added and it became R-CHOP. It's not too hard, and they've had great success in controlling the side affects of nausea and diarrhea. My lymphoma is too aggressive for R-CHOP, so they've added about 4 other agents witch require hospitalization. No radiation is involved, and I can only do this regimen once due to cardiotoxicity. However, the chances of partial or complete remission are pretty high, and, so far, I haven't been too uncomfortable. I get bored in the hospitable, uncomfortable in the bed, and the food is just awful. Other than that, it's a piece of cake. I have an indwelling pic line which will serve me the entire 6 months of my treatment. I haven't been nauseous, only a little uncomfortable, and hungry! The steroids are hard to take. I'm puffy, hungry, and thirsty all at the same time. I've had a remarkable resolution of the mass, and I'm starting to look into ways to resume traveling. My mucus membranes are very fragile so no anal or oral for me right now. Most hopefully, this is only temporary. I don't have much energy which those who know me know I had a lot of. This is hard. But six months for 2-5 or more years is not a bad deal. On a philosophical note, I'd pretty much completed my bucket list, so I have few regrets. Anything I can answer, I will. We all go this way, and this seems to be a more than usually interesting way to make the journey. It is, after all, just another adventure--certainly as exciting as bungee jumping!!

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Unsub, If you have nearly completed your bucket list, I suggest you reconsider and redo the list. It has been shown that people do better and live longer when they feel that there is something important left for them to do. So while you are lolling around the hospital, reconsider that list. I recommend having at least one thing on that list you can do soon after leaving the hospital. Prior to my wife's first hospitalization for chemotherapy, i had purchased a special piece of jewelry. While she was in the hospital, I told her that the piece was ready. She told me we would stop at the store on the way home from the hospital. Despite her being barely able to walk out of the door of the hospital to the curbside car, 15 minutes later she practically ran into the jewelry store. Kids in the candy store had nothing on my wife in that jewelry store. So plan something, big or small soon after discharge. You deserve a treat, so be kind to yourself.

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Guest Starbuck

Unsub, your willingness to share your experience is very generous. Chances are, we'll learn something that will later be useful to one of us or one of our friends. That's what happened when I "held the hand" (so to speak) of a fellow going through cancer treatments a few years ago. I saw him every day during hospitalizations, took him for out-patient chemo and learned a lot. I also got to see how much strength, comfort and--I know it sounds weird--even pleasure he took from the amazingly kind and helpful medical professionals who took care of him. They were so supportive and encouraging. I hope that's your experience too. I'll be reading your posts with interest and will be one of the many here wishing you well.

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With all of the positive vibes you give off, and all of our support in the form or prayer, positive vibes, posts on the forum, anecdotes to come, revelations, feelings, anguish, and joy - I feel a book coming out detailing your journey and your feelings. So - don't let any of your postings, emails, conversations, or feelings disappear.

 

We have had a few very ill members that we know of on the forum and if we can do anything at all to hasten your recovery, especially adding some humor along the way, we will do so!

 

Funguy

 

(time to find someone to smuggle in that pastrami sandwich from the corner deli!)

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I'm really touched to read the outpouring of good wishes to our fellow poster unsub. You guys really are a good bunch.

 

And to unsub, yes please do post if you're up to it. I come here to learn and I think you may have much to teach us. And thank you for whatever you may share with us. And my own prayers and well-wishes to you at this time.

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