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Newly diagnose

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Hello all, well I was just diagnose with Non-Hodgkin indolent follicular lymphoma of the B cell type. It sounds confusing and long but I've been reading and researching more information about this disease and have been learning more and more. I went to an oncologist in Fayetteville, GA. and recomemded chemo and Rituxan for 6 months and Rituxan as maintenance for an additional 2 years with s stem cell transplant after remission. Searching through the internet I've found that Memorial Sloan-Kettering Cancer Center was a good hospital and its only 45 minutes from my house. Does any body know anything about this hospital? I could only read what's instored for my future as I fight this disease and not knowing if I will ever have my job back or a normal life as I once knew it. I am a 35 year old male in other wise good health. I have stage 3 lymphoma and lately have been feeling low in energy and pains all over my body some of them sharp. should I wait 2 more weeks for that appointment in NY to Sloan-Kettering or should I start treatment now? Thanks to all those with advise and God bless all of you.

Edwin

donald51's picture
donald51
Posts: 62
Joined: Feb 2008

Hi Edwin,
Sorry to here about your dx. I would start first by suggesting you keep your appt.. You have exactly what I had and it is very slow growing. There are other treatments available to you that are much easier on you and life as you no it now will continue. I was dx. with stage 4 follicular nhl with 15% BMI in Jan. '08. Got my 2nd opinion from an onc with a large university cancer clinic that could also provide me with the treatment that I wanted. Zevalin or Bexxar. I leaned more towards the zevalin and so the doctor.
My zevalin tx was administered in June '08 and I was in remission by August without any adverse effects such as weight loss, getting sick or loosing hair. I am a BIG advocate for new cancer treatments available to us. I am still NED(No Evidence of Disease)according to my last ct scan. I do go for "maintenance therapy" every two months. This therapy consists of an infusion of the drug named Rituxan. It takes about 2 hours and off I go.
I do not know anything about the hospital in question but there are a lot of good ones out there. Hope to here about your NY visit. Stay strong and positive.
Don

amybesunder
Posts: 15
Joined: Aug 2009

Hi Edwin,

I am also a 35 year old with follicular NHL Stage 3 - doing watch & wait. Get a second opinion at Sloan. I grew up in NYC and this is a good hospital. With fNHL, you have time to consider all your options. I got three opinions. They all recommended W & W and so I felt comfortable with the choice.

Stay well,
Amy

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Thanks Don and Amy for your response and advise it is greatly appreciated. Don what is your side effets with rituxan? Amy how long ago did you get dx and what W&W? Well thank you both so much. God bless.

Edwin

donald51's picture
donald51
Posts: 62
Joined: Feb 2008

Hi Edwin,
I do not experience any side effects from the rituxan. I did with my very first infusion as do a large number of recipients. Not everyone has the same reaction though. When I started to react it was just a little itching and sneezing. They countered the reaction with a steroid and benedryl. They give me this prior to every rituxan infusion. If you would like, you can read my story here at this site. Click on my name below my picture, this takes you to my profile. Then click on the blog tab.
Stay strong and positive.

Don

amybesunder
Posts: 15
Joined: Aug 2009

Hi Edwin,

For those of us who are diagnosed but have no symptoms, dr.'s often recommend "watchful waiting." This means we wait to start treatment till we have effects from the disease. I see my dr. every three months, get blood draws and scans and if nothing changes or grows, I hold off on treatment. There are so many new treatments that the longer I can hold out, the better the chances of getting a treatment with fewer side effects.

For me, I had a lump in my upper thigh for six months that didn't hurt. I was running every day so I assumed it was sports related. When I mentioned it to my doctor at my annual exam, she wanted to get it biopsied. I was shocked to learn it was fNHL. My energy was high, I didn't have night sweats, no symptoms at all!

I hope you are taking care - I remember the first weeks of my diagnosis as the WORST. I was a big ball of worry. Know that things get better.

Amy

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Don, I too noticed this big ball trying to hang out my right armpit while I was bathing, I almost fainted at first sight, lol. I am starting to get worried though because my biopsy was done on my right side of the groin area and upper thigh. Well right above it, just below the waist line, I feel a slight pain on something that feels like a tendon or what I think it would be those stringy thingies that inter connect the lymph nodes. As I raise my right arm and bent back some and touch on the lower right side of the lower stomach I can feel what it would be the lymph node and those things that inter connect them; well as I touch them they hurt slightly but the most unconfortable feeling is that it feels like there is tention on those thingies (I hope you're keeping up with me). Do you have any idea or can someone share a similar experience about this. Sometimes I also feel it on the right side of the upper leg by the groin area as I strech the leg. My thoughts on it is are those tissues dying or something? I am normally a happy natured guy and usually wearing a smile but every time I think about the unconfortable/slight pain on the right side of my lower stomach all happy feelings goes away. Amy I had the symptoms but never put them together (night sweats, fevers, rashes and weight loss) I did see the small balls on my biceps and neck but since they didn't hurt, itched or grew in size I said ehh, well ehh now, I am all worried about it. Thank you both so much fo rtaking the time and being patient with me. May God keep blessing ya.

donald51's picture
donald51
Posts: 62
Joined: Feb 2008

Hey Edwin,
What type of biopsy did you have? Was it a needle or surgical? I can't really say what causes your pain since I had none associated with any of my enlarged nodes. That is until after the surgical biopsy. It was done in my left armpit, where the Dr. removed several nodes. To this day I can touch the area or use my arm in such a way as to feel the same annoying pain. My onc says it's just the scar tissue. Then I ask, why do I feel the same thing in my right armpit sometimes? Phsycological perhaps? lol. I don't know. We become more keen to feeling things going on in our bodies when we know something is there. I would like to talk to a doctor that has been through nhl.
Stay strong and positive†

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

I had a surgical biopsy done, Memoria sloan-kettering is going to biopsy some of the samples, I originally had it done in Austin, TX. But the pain is actually above the area where the biopsy was done. It only hurts when I touch it. Can't wait til the 24 to see the oncologist. I do think its because of the biopsy but it hurts all the way up to a lymph node that I have at the bottom of my stomach at the right side. Question, would I be able to work while on chemotherapy? Thanks and God bless.

Edwin

donald51's picture
donald51
Posts: 62
Joined: Feb 2008

Hey Edwin,
How are you doing? Hope all is well with you. How long have you been flying? I worked in aviation a good portion of my life. I am trying to find out what may have caused my cancer and jet fuel is one of the things that I suspect. Possibly? I won't know for a while yet. I have read of other peoaple that have worked through there chemo but remember, everyone handles it differently. I did not have chemo but when I had my treatment I chose to stay home until the doctor cleared me once my white blood count returned to satisfactory level.
Well the 24th is close. Have you made a list of questions for the doctor in NY? Hope it goes well for you. Keep us informed. Stay strong and positive†

Don

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

I've been flying for about 13 years and love it to this day, however due to my condition now I can't work as a commercial pilot until the doctors and the FAA clears me too. Tuesday is my date with the oncologist (you remembered :) and I do have some questions for them. I am happy that I have a very supportive family and they are helping me evdery step of the way. I just can't wait to go back to work; one of the things that bother me is watching other people go to work while I stay home, but I rather be me have the sickness than any other of my family members. When I was in college back in 2000 I worked refueling aricraft both jet fuel or JP4 and 100LL. What was your job while in aviation? Well Don I will defenately post my visit and experience at Sloan-Ketterin on tuesday, take care and will chat with you soon. Have a bless weekend.

Edwin

DenJ
Posts: 26
Joined: Oct 2009

Hi Edwin....and Don too. I also have been working in aviation for 30 yrs. I was diagnosed with level 2 follicular NHL this past March. I recieved 6 treatments of R CHOP, the last one in September. The subsequent CT scan came back negative....thank you Lord. I agree with Don about people respond differently to chemo, but, as it always wasn't easy, I only had to miss 3 days because of my feeling poorly, and 4 days because of scheduling. So, it wasn't too bad for me.
As I said, I have worked for 30 yrs. for a major airline and have been around alot of the same things as the two of you......so who knows? If anyone puts the pieces togethr...let me know.
And Edwin...best of luck to you, and don't let it run you....you run it. Time to hate that disease and carry on.
Den

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Den thanks for commenting on your experience, it does bring me hope in continuing with my carrer. My question is how did you handle the medical certificate with the FAA? and was there any restrictions on it? I have to have my oncologist send them the info within the next 30 days or it will be denied. Hope to hear from you soon, take care and God bless.

Edwin

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Den thanks for commenting on your experience, it does bring me hope in continuing with my carrer. My question is how did you handle the medical certificate with the FAA? and was there any restrictions on it? I have to have my oncologist send them the info within the next 30 days or it will be denied. Hope to hear from you soon, take care and God bless.

Edwin

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Den thanks for commenting on your experience, it does bring me hope in continuing with my carrer. My question is how did you handle the medical certificate with the FAA? and was there any restrictions on it? I have to have my oncologist send them the info within the next 30 days or it will be denied. Hope to hear from you soon, take care and God bless.

Edwin

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Den thanks for commenting on your experience, it does bring me hope in continuing with my carrer. My question is how did you handle the medical certificate with the FAA? and was there any restrictions on it? I have to have my oncologist send them the info within the next 30 days or it will be denied. Hope to hear from you soon, take care and God bless.

Edwin

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Den thanks for commenting on your experience, it does bring me hope in continuing with my carrer. My question is how did you handle the medical certificate with the FAA? and was there any restrictions on it? I have to have my oncologist send them the info within the next 30 days or it will be denied. Hope to hear from you soon, take care and God bless.

Edwin

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

How did this happened? well take it as I want my point accross lol. Take care.

Edwin

patcard
Posts: 6
Joined: Sep 2009

Hello everyone, I was diagnosed with marginial zone lymphoma,in may, dr. told me very rare about 2-4% of lymphomas, I was on watch and wait until i had my 3 month appointment,there was a slight increase in size,I had lymphomas in my groin area,left armpit and on my air passage, To this day I still dont have any symptons,I found out after my pcp sent me for a chest x-ray. In Nov, I started a 4 week drug infusion study with rituxan, First infusion took about 7 hours and the final three was much less time at 3 hours, luckily I didnt have any side affects during or after any of my treatments.I have a ct scan scheduled in early jan to see if there are any changes and I have to get infusions every 3 months for next two years. I live near boston so fortunately there are some wonderful cancer hospitals here, I myself have been going to the Mass. General Hospital, nice getting to chat with everyone who understand what we are going through. pat

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