My journey....starting with a swollen right groin lymph node.
Comments
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NHL DiagnosisAaronW said:Diagnosis
Well, the general surgeon's office called me early this morning and asked me to come in. I knew that wasn't good because they wouldn't tell me anything over the phone. About a half and hour later I was given the news, NHL possibly early stages. I have two clusters of swollen nodes - one in right groin area and the other somewhere nearby in the abdomen.
He referred me to a Stanford Oncology group but I couldn't get an appt. until Friday morning. I'm not sure, but I imagine I'll need to get a blood panel, bone marrow check and a full-body scan. Any input is appreciated because the surgeon was not sure exactly what will be done though he just mentioned these things, that's why I have to go to the Oncologists.
I expected this so I had a few weeks to be strong but it's still tough. I thought NHL was the "better" one but after doing some reading when I got home it seems that the survival cure rate is a little less overall than regular Hodgkins. Any input would be appreciated...thank you.
Aaron
Hi Aaron,
My name is Leslie and I wanted to say hi and welcome you to our little group here. I am really sorry that you had to become a member, but everyone here is wonderful and really wil;ing to help. I have had NHL twice, first time in Jan 2008, with a recurrance in June of 2009 while still on maintenance treatment. I finished 6 cycles of RCHOP in Feb and am currently in remission, YEAH!!! My type of lymphoma was both B and T cell, agressive and very rare.
Anyway, I live in Santa Cruz so we're neighbors. If you are in Monterey there is a group of Oncologist who are very good and very knowledgeable in your area. And CHOMP is also a good hospital. Like you I went to Stanford for a second opinion both the first and second times. The specialist I saw is no long there but with Genentec, makers of Rituxian. I also go down to UCSF and love my specialist there. And my hemi/onc here in SC has been my doctor for 18 years. Getting into Stanford in just a few days is great. Be prepared for your head to be swimming with the amt of info they will throw at you. Bring a friend as your second pair of ears and a tape recorder if you have one. If you havn't had a full body CT they will want that plus a PET/CT, different animal, complete blood work and a BMB. Be sure to insist on being given sedations for this test as I've heard Stanford doesn't do this. Oh, also all the pathology slides so they can make their diagnosis.
Good luck, I'll be thinking of you. I have survived breast cancer twice and lymphoma twice, not easy but I'm still here kicking and fighting. I'm sorry but in my world there is no good cancer and most people who say that have never had cancer. Sorry if I offend anyone but that is how I feel. And sorry for this super long post.
Blessings,
Leslie0 -
Don't mind at all. I am actually doing pretty good. Better than I thought anyway. I did have a lot of tiredness after my first round of treatment. That was probably due to something called tumor lysis. Seems that happens to a lot of people first time around due to the extreme killing of the bad cells. The tumor spend a long time growing and you never notice it. When the chemo hits it then it starts killing so fast it causes discomfort in the kidneys trying to get rid of the dead cells so quickly. That could cause kidney shut down in some cases so you have to be aware of what is going on. The discomfort in the abdomen was due to to the rapid shrinkage of the tumors leaving empty space and the organs moving to fill those areas. What may have taken years to build is shrinking in just days. The chemo will destroy good cells as well and this is what causes the weakness and tiredness. You wind up with dropping blood counts. The good thing is in most cases the good cells regenerate very fast. The lymphoma cells are slow growing and take a long time to grow back. We all react differently to the chemo, but in my case I have been fortunate in that I have rebounded pretty quickly. From what you say the Dr. says it sounds like stage 2 for you, but you really won't know till they do a biopsy to test the type of cell and a scan to find where they are located. If it gets to your bone it will be a stage 4. It doesn't matter where it goes in your body it will still be lymphoma. If it is in your bones you do not have bone cancer. It is lymphoma that has reached the bone. There's a big difference. I understand there are a great many types of lymphoma so we have to start from there. anything else let me know. JohnAaronW said:Okay I'm not the only one then...LOL...
Since I basically have what you have, how are you doing with what you are going through if you don't mind me asking?0 -
HL verse NHLAaronW said:Okay I'm not the only one then...LOL...
Since I basically have what you have, how are you doing with what you are going through if you don't mind me asking?
Can't say I really understand the difference but I know that HL for the most part is considered curable. Some forms of aggressive nhl like DLBC is also considered curable. However the indilent types of NHL are not curable at this time, but are highly treatable. I'm sure you guys all know this already. I know the standard treatment for HL is much more harsh than the standard treatment for most NHL. Hope this helped a little.
Leslie0 -
This is the worstKC13167 said:Cleaning Party
Sue, You've sure got some great friends! How thoughtful of them. Kellie
Aaron,
The waiting is by far the worst part of NHL for me. Biopsies, tests, scans, it's all so overwhelming. We have so many questions but our minds can't even seem to sort through them to even begin to ask, then when we do get to talk to the doctor we can't remember them.
Treatments are hard physically, emotionally and spiritually draining. I still have moments of doubt and fear that I am sure will never completely stop. The difference now is I know my body so much better. I know when to tell my doctor that I'm not feeling good. I am beginning to trust my instincts sooner than ever before. In some ways I feel like a hypocondriac but it's better to be safe than sorry. Now when something weird pops up I preface my question with I may be imagining things here, but...
This cancer experience is and has been life changing. Change isn't always a bad thing.
Keep your head up, it'll be ok.
Take care,
Beth0 -
Aaron/DiagnosisAaronW said:Diagnosis
Well, the general surgeon's office called me early this morning and asked me to come in. I knew that wasn't good because they wouldn't tell me anything over the phone. About a half and hour later I was given the news, NHL possibly early stages. I have two clusters of swollen nodes - one in right groin area and the other somewhere nearby in the abdomen.
He referred me to a Stanford Oncology group but I couldn't get an appt. until Friday morning. I'm not sure, but I imagine I'll need to get a blood panel, bone marrow check and a full-body scan. Any input is appreciated because the surgeon was not sure exactly what will be done though he just mentioned these things, that's why I have to go to the Oncologists.
I expected this so I had a few weeks to be strong but it's still tough. I thought NHL was the "better" one but after doing some reading when I got home it seems that the survival cure rate is a little less overall than regular Hodgkins. Any input would be appreciated...thank you.
Aaron
Hi Aaron,
Well...at least now you know! I am soooo sorry! You've still got alot of testing ahead of you, but things should start to roll right along. Beth is absolutely right....the waiting for each test result is totally the pitt's and nerve wracking as all get out! When it's time to do the bone marrow biopsy ask if they can sedate you. I "NO LIKEY" the BMB! My next one will not be allowed un-less I'm sedated, and my onc has now assured me she will give me something. I can't help you on info about HL vs NHL. Once I was told I had Follicular NHL-Grade2-stage3,(typeA) that was enough info for me. Before I learned my EXACT diagnosis I made myself crazy researching. I was rum dummy from nights on end going from one web site to another. No, No No...not good! Now I just come here to the group and ask all of my questions..vent.. ramble or share. There is ALWAYS someone here that is ready to help. This will be my antsy week as Thursday gets closer."YIKES"!!..ha! I will keep you in my prayers and think only good thoughts for you. Soooo many folks here with such good information to pass along to you....just ask! Sue0 -
Thank youdixiegirl said:This is the worst
Aaron,
The waiting is by far the worst part of NHL for me. Biopsies, tests, scans, it's all so overwhelming. We have so many questions but our minds can't even seem to sort through them to even begin to ask, then when we do get to talk to the doctor we can't remember them.
Treatments are hard physically, emotionally and spiritually draining. I still have moments of doubt and fear that I am sure will never completely stop. The difference now is I know my body so much better. I know when to tell my doctor that I'm not feeling good. I am beginning to trust my instincts sooner than ever before. In some ways I feel like a hypocondriac but it's better to be safe than sorry. Now when something weird pops up I preface my question with I may be imagining things here, but...
This cancer experience is and has been life changing. Change isn't always a bad thing.
Keep your head up, it'll be ok.
Take care,
Beth
Beth, Leslie, John,
Thank you for your support and replies. Today is still a tough day for me but I'm managing. Hearing your experiences and insight means alot to me. I'll post again tomorrow...I wish you all well.
0 -
Met with Oncologistallmost60 said:Aaron/Diagnosis
Hi Aaron,
Well...at least now you know! I am soooo sorry! You've still got alot of testing ahead of you, but things should start to roll right along. Beth is absolutely right....the waiting for each test result is totally the pitt's and nerve wracking as all get out! When it's time to do the bone marrow biopsy ask if they can sedate you. I "NO LIKEY" the BMB! My next one will not be allowed un-less I'm sedated, and my onc has now assured me she will give me something. I can't help you on info about HL vs NHL. Once I was told I had Follicular NHL-Grade2-stage3,(typeA) that was enough info for me. Before I learned my EXACT diagnosis I made myself crazy researching. I was rum dummy from nights on end going from one web site to another. No, No No...not good! Now I just come here to the group and ask all of my questions..vent.. ramble or share. There is ALWAYS someone here that is ready to help. This will be my antsy week as Thursday gets closer."YIKES"!!..ha! I will keep you in my prayers and think only good thoughts for you. Soooo many folks here with such good information to pass along to you....just ask! Sue
Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.
Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.
He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.
This must all sound very familiar to most of you...
Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.
Aaron0 -
FULL BODY SCAN AND BMBAaronW said:Met with Oncologist
Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.
Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.
He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.
This must all sound very familiar to most of you...
Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.
Aaron
Aaron,
I will do the best I can to explain. The ct scan picks up abnormal areas of the body such as enlarged lymph nodes. Sometimes they do it with contrast and it makes the areas really stand out. The full body scan is the pet scan where they give you contrast and inject a small amt of radioactive material into your vein. The stuff you drink is full of sugar. the sugar attaches to the radioactive material and it circulates thru out the body and where there is any cancer activity the scan will show an uptake in activity in the cancer cells. The metabolism of cancer cells is much higher than in normal cells. The scan would not be able to pick the activity up if not for the higher than normal activity. This is how they will stage you. Depending on where the high activity is in you body. An example was I had a lot of activity in my abdomen but very little in a small area in the shoulder and groin. The shoulder and groin was not even picked up on the ct scan. Those areas were so so small the onc. Doc said it was doubtful it was in the bone. I had a bmb to be sure and guess what,it was in the bone. Very little but it was still in there and that put me at a stage 4. Doc said it did not matter, it was all treated the same. Anyway it did not hurt because I had the anesthetic. I did feel the pressure which was uncomfortable. I would not have had it if not for the anesthetic, because I hear they are very painful. I am sure you will get some responses to that effect very shortly. We are still here for you. Most of us have been thru it or are about to go thru it. John0 -
bmbCOBRA666 said:FULL BODY SCAN AND BMB
Aaron,
I will do the best I can to explain. The ct scan picks up abnormal areas of the body such as enlarged lymph nodes. Sometimes they do it with contrast and it makes the areas really stand out. The full body scan is the pet scan where they give you contrast and inject a small amt of radioactive material into your vein. The stuff you drink is full of sugar. the sugar attaches to the radioactive material and it circulates thru out the body and where there is any cancer activity the scan will show an uptake in activity in the cancer cells. The metabolism of cancer cells is much higher than in normal cells. The scan would not be able to pick the activity up if not for the higher than normal activity. This is how they will stage you. Depending on where the high activity is in you body. An example was I had a lot of activity in my abdomen but very little in a small area in the shoulder and groin. The shoulder and groin was not even picked up on the ct scan. Those areas were so so small the onc. Doc said it was doubtful it was in the bone. I had a bmb to be sure and guess what,it was in the bone. Very little but it was still in there and that put me at a stage 4. Doc said it did not matter, it was all treated the same. Anyway it did not hurt because I had the anesthetic. I did feel the pressure which was uncomfortable. I would not have had it if not for the anesthetic, because I hear they are very painful. I am sure you will get some responses to that effect very shortly. We are still here for you. Most of us have been thru it or are about to go thru it. John
Thanks John...anesthetic it is. 0 -
bone marrow testAaronW said:Met with Oncologist
Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.
Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.
He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.
This must all sound very familiar to most of you...
Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.
Aaron
Hi Aaron,
I found mine the same way in the right groin. I was dx with stage 4 grade three Agressive Folicular NHL. The bone marrow test is not pleasent. My dr said it was like being kicked my a mule. I agree. He said it was 80% likely to be in my bone marrow. It was not. I was given six sessions of R-chop and after the mid point was scanned and all the cancer was gone. I just saw my dr for a follow up last week and I am still cancer free for the past three and one half years. Everyone is different and you seem to be in good phyiscal shape.
Hang in there. You will get through this. God Bless, Bud0 -
scanAaronW said:Thank you
Beth, Leslie, John,
Thank you for your support and replies. Today is still a tough day for me but I'm managing. Hearing your experiences and insight means alot to me. I'll post again tomorrow...I wish you all well.
Aaron,
My scans are combo pet/ct. I don't have to drink anything though. They inject a small dose of radioactive sugar through an IV. I wait for about 30 to 45 minutes then they wheelchair me to the truck...it sits outside of the hospital (mobile unit serves multiple hospitals). I lay on the table, go to sleep when I can for about 20-25 minutes and go home and nurse my headache. Pet scans ALWAYS give me a horrible headache. I think it's a combination of the sugar and the coffee withdrawl............I don't do well without coffee. LOL
It's painless, just boring. I do have to put my arms up over my head though and with a history of bursitis in my shoulders I am in a lot of pain for awhile just because of the position. (I am a wuss)
I started this journey with stage 1. It's come back a couple times and I am now stage 3 but like John says stage doesn't really matter too much with lymphomas.
Good luck to you, and soon you'll be ready to go. Go have a good weekend and enjoy the break before the whirlwind starts.
Take care,
Beth0 -
B.M.B...(bone marrow biopsy)AaronW said:Met with Oncologist
Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.
Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.
He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.
This must all sound very familiar to most of you...
Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.
Aaron
Hi Aaron,
I was not given a sedative for the BMB, just the lydacane(sp?) to numb the area where they go in. Please... ask ahead of time to be sedated or given some really strong pain medicine, because without it, the procedure is very very un-comfortable to say the least. No, I'll be very truthful...for me it was the worst thing I've had done since being diagnosed. The last thing I'd ever want to do is scare someone, but it's always better to tell the truth, in my opinion. I never had a full body scan done...just the CT scan which wasn't painful at all for me. Sounds like you are well on your way to getting treatment. Keep us posted and I'll be thinking of you with good positive thoughts.
Sue0 -
scanAaronW said:Met with Oncologist
Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.
Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.
He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.
This must all sound very familiar to most of you...
Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.
Aaron
Hi Aaron,
If you talking about the pet/ct scan, I had that done last week at Stanford. They don't allow you to eat or drink anything except water for 8 hours, then they give you an injection of the radioactive glucose. You wait in a quiet area for about 45 min the go into the scan area. They have you lie down and wrap you like a mummy so your arms cannot move. Takes about 30 min. I also had an additional ct after the pet/ct so it was a bit longer for me. If you can have it in the morning try to do so. That way you don't have to go all day without eating. Are you planning on having it done at Stanford. Best wishes as you start your journey..
Lisha0 -
BMBAaronW said:Met with Oncologist
Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.
Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.
He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.
This must all sound very familiar to most of you...
Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.
Aaron
Hey Aaron,
I'm an old guy who's tried lots of things, including some pretty heavy piercing (like 00 ga surface piercing). I don't have any of that any more, but I can tell you I would rather do that again than have another bmb without full anesthesia. I had one done while I was still on the table after the lump in my throat was taken out. That was no problem. Then, down at Anderson, I had another one with something they called "sleepy" anesthetic. It turned out to be oral versed plus local anesthetic.
Next time I'll insist on full anesthetic. I told them I am a wuss. Good news was that they were both negative.
Good luck with yours, and don't worry. This is my second week on chemo and I have had almost no problem. Just wear out much sooner than I used to.
God Bless,
Tom0 -
BMB/PETtcvine said:BMB
Hey Aaron,
I'm an old guy who's tried lots of things, including some pretty heavy piercing (like 00 ga surface piercing). I don't have any of that any more, but I can tell you I would rather do that again than have another bmb without full anesthesia. I had one done while I was still on the table after the lump in my throat was taken out. That was no problem. Then, down at Anderson, I had another one with something they called "sleepy" anesthetic. It turned out to be oral versed plus local anesthetic.
Next time I'll insist on full anesthetic. I told them I am a wuss. Good news was that they were both negative.
Good luck with yours, and don't worry. This is my second week on chemo and I have had almost no problem. Just wear out much sooner than I used to.
God Bless,
Tom
John, Bud, Sue, Lisha Tom,
Thank you. I'm not much of a needle guy anyway so thanks for helping me make up my mind with this one ahead of time! lol
I feel like all this attention is focused on me right now and I feel bad about that when I read other posts of people who are in a much worse situation than I. I'm sure I'll be able to help out those in need in the future just like you all are helping me. Thank you very much. I'll keep you posted on the progress. Tomorrow is just blood work so that is the easy of the three...next week are the PET/BMB.
Stay safe and have a great weekend....Aaron0 -
BMB/PETtcvine said:BMB
Hey Aaron,
I'm an old guy who's tried lots of things, including some pretty heavy piercing (like 00 ga surface piercing). I don't have any of that any more, but I can tell you I would rather do that again than have another bmb without full anesthesia. I had one done while I was still on the table after the lump in my throat was taken out. That was no problem. Then, down at Anderson, I had another one with something they called "sleepy" anesthetic. It turned out to be oral versed plus local anesthetic.
Next time I'll insist on full anesthetic. I told them I am a wuss. Good news was that they were both negative.
Good luck with yours, and don't worry. This is my second week on chemo and I have had almost no problem. Just wear out much sooner than I used to.
God Bless,
Tom
John, Bud, Sue, Lisha, Tom,
Thank you. I'm not much of a needle guy anyway so thanks for helping me make up my mind with this one ahead of time! lol
I feel like all this attention is focused on me right now and I feel bad about that when I read other posts of people who are in a much worse situation than I. I'm sure I'll be able to help out those in need in the future just like you all are helping me. Thank you very much. I'll keep you posted on the progress. Tomorrow is just blood work so that is the easy of the three...next week are the PET/BMB.
Stay safe and have a great weekend....Aaron0 -
BMBAaronW said:BMB/PET
John, Bud, Sue, Lisha Tom,
Thank you. I'm not much of a needle guy anyway so thanks for helping me make up my mind with this one ahead of time! lol
I feel like all this attention is focused on me right now and I feel bad about that when I read other posts of people who are in a much worse situation than I. I'm sure I'll be able to help out those in need in the future just like you all are helping me. Thank you very much. I'll keep you posted on the progress. Tomorrow is just blood work so that is the easy of the three...next week are the PET/BMB.
Stay safe and have a great weekend....Aaron
Aaron,
When I got my bmb I was sitting in the exam room and next to me was the bmb tray. It was covered up and sealed to keep it sanitary. I never saw the needle till after the proceedure was over. Glad I didn't!! That was the thickest needle I ever saw. It was about an 1/8" across. It is a hollow stainless shaft that they screw into the bone. It has threads on the tip. When they take it out after they get the samples, they did not unscrew it. They rocked it back and forth. That was a lot of pressure. I actually thought it may break. I am not trying to cause you any anxiety, but ask them to unscrew the thing when taking it out. I did not know to ask them that. I just don't want you to have any surprises. I wish I would have known before I went in. I did have the anesthesia and my Onc. explained everything to me while it was going on, but removing that thing was not a good experience. There are no nerve endings in the bone so I guess they figure it is OK. John0 -
WOWCOBRA666 said:BMB
Aaron,
When I got my bmb I was sitting in the exam room and next to me was the bmb tray. It was covered up and sealed to keep it sanitary. I never saw the needle till after the proceedure was over. Glad I didn't!! That was the thickest needle I ever saw. It was about an 1/8" across. It is a hollow stainless shaft that they screw into the bone. It has threads on the tip. When they take it out after they get the samples, they did not unscrew it. They rocked it back and forth. That was a lot of pressure. I actually thought it may break. I am not trying to cause you any anxiety, but ask them to unscrew the thing when taking it out. I did not know to ask them that. I just don't want you to have any surprises. I wish I would have known before I went in. I did have the anesthesia and my Onc. explained everything to me while it was going on, but removing that thing was not a good experience. There are no nerve endings in the bone so I guess they figure it is OK. John
hey I'm all about not pulling punches....and I really appreciate it. Maybe I can blame that on my line of work.
Thanks for the heads up! 0 -
scandixiegirl said:scan
Aaron,
My scans are combo pet/ct. I don't have to drink anything though. They inject a small dose of radioactive sugar through an IV. I wait for about 30 to 45 minutes then they wheelchair me to the truck...it sits outside of the hospital (mobile unit serves multiple hospitals). I lay on the table, go to sleep when I can for about 20-25 minutes and go home and nurse my headache. Pet scans ALWAYS give me a horrible headache. I think it's a combination of the sugar and the coffee withdrawl............I don't do well without coffee. LOL
It's painless, just boring. I do have to put my arms up over my head though and with a history of bursitis in my shoulders I am in a lot of pain for awhile just because of the position. (I am a wuss)
I started this journey with stage 1. It's come back a couple times and I am now stage 3 but like John says stage doesn't really matter too much with lymphomas.
Good luck to you, and soon you'll be ready to go. Go have a good weekend and enjoy the break before the whirlwind starts.
Take care,
Beth
Starbucks addict myself so I'm with you on that
Thank you for the insight....have a great weekend.
Aaron0 -
Moving along!AaronW said:Met with Oncologist
Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.
Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.
He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.
This must all sound very familiar to most of you...
Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.
Aaron
Things are underway for you it sounds like. You mention you are a stage 1 and 2 and I could be wrong but are you sure that is not your grade? The 1 and 2's are the indolent or slow growing types and they can tell that from biopsies. The upcoming scan will show the areas involved such as above the diaphragm, above and below, left side, right or both, other organ involvement etc. This will determine your stage. Plus the bone marrow biopsy. I was diagnosed 2 years ago with follicular NHL grade 1 stage 4A. The letter refers to without symptoms(A) or with(B). I was very upset at being a stage 4 with the lymphoma very widespread but after talking with my hematologist was able to understand that with lymphoma it does not matter where it got to it is all still lymphoma and when they treat it, it all gets treated. In addition I had 50% bone marrow involvement. I now am in complete remission including the bone marrow. As to that bone marrow biopsy I just don't understand why so many are put through that with just a local anaesthetic. It's a rough procedure and they have the means to make it a whole lot better. My MD always puts his patients under light sedation one of the reasons being that they have to go in twice at the back of the pelvis both sides. I have had this procedure twice and both times I was put to sleep with what is called MAC sedation standing for Monitered Anaesthetic Control. It is great and holds much less risk and recovery time then general anaesthetic. I went to sleep and woke up when it was all over. I don't remember anything nor did I feel anything yet I was recovered and ready to go in less then an hour. In fact if you wear the right clothes(sweats) or something that is easy to get partially down you don't even need to get undressed. I felt fine with no nausea or anything and walked out with a dressing across my lower back. They medicated me for pain through the IV before they woke me up so the sore back came on gradually over the next several hours but was not too bad, just needed Tylenol for it. Tell them you want the MAC or light sedation and that you don't want to be aware of any of it. Hopefully they will be in agreement. Sorry this has gotten so long but for me at least I wanted all the info I could get and understand from anyone who had experienced it. Good luck!! Mary0
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