Going for bone marrow/biopsy test

allmost60
allmost60 Member Posts: 3,178
I have this one last test to finish out the staging of my cancer. Right now I know I am stage 3 follicular lymphnoma-grade2-Type A. If the results show that the cancer is also in the marrow, does that put me at a stage 4, and does that also mean the treatment will be alot more involved than if it wasn't in the bone marrow?
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Comments

  • COBRA666
    COBRA666 Member Posts: 2,401
    BONE MARROW BIOPSY
    Same thing happened here. I was same as you except I was grade 1. I was on the watch and wait regime for about a month and then had a bone marrow biopsy. It was in the bone a little, but it was still in the bone. That will put you at a stage 4. Mine is mostly in my abdominal area. The treatment is the same for 3 and 4. I am on my 2nd round of R-cvp. Just finished the 2nd round 2 days ago. How was it discovered. Probably like everyone else it was found when checking for something else. Be sure to get back to us and we will be here to see you thru this. John
  • vinny59
    vinny59 Member Posts: 1,032
    bone marrow
    Hi, I believe that stage four is when you have cancer above and below your chest, I have it in five different spot's within my body which make's me stage 4. Hope this help's a little..... good luck Vinny
  • merrywinner
    merrywinner Member Posts: 626
    Welcome
    Sorry to hear that you are going through this but let me reassure you that there are tons of treatments and lots of hope. I will try to answer your question as best I can based on my own personal experience. There's really no short answer so bear with me if I get long-winded. Lymphoma is different from other types of cancers so the staging,while important,is not as crucial. I was diagnosed with follicular NHL ,Grade1,stage 4A and that was before my Bone marrow marrow biopsy. It has something to do with areas of activity on the right and left side of the body, above and below the diaphragm, any additional organ involvement etc. When I had my bone marrow biopsy my Md told me that he would be out of town but his staff would call me with the results. He went on to say that if they told me there was no bone marrow involvement I was to say "OK" and if they told me there was bone marrow involvement I was to say "OK". He said it didn't matter. If and when they treat the lymphoma it all gets treated. He used the example of Leukemia...Is it in the blood in my arm, is it in my leg??? It doesn't matter it is still Leukemia. I think the grade is more important in treating Lymphoma. The grade 1 and 2's are the indolent or slow growing and the 3 and 4's are the faster growing and that determines the type of treatment more then anything else. If you have the slow it's a little more difficult to treat because the drugs need to reach the cancer cells during mitosis or when they are active in order to kill them so if they are growing slowly it's harder and may take longer to get them all. Conversely if the grade is more aggressive it's growing quickly so the cells are very active and the drugs can find them more easily. Which one is better to have? Both have their upsides and downsides but both can be treated effectively. If it is any help I had 50% bone marrow involvement prior to treatment. I am now in complete remission and my bone marrow is clear. There is so very much that can be done. My Md put it this way...."It's not weather I can treat you it's what do I want to use. I have an arsenal as long as my arm." That helped me a lot. It is a long journey and not always fun but it does end and for most of us there is remission. I am sorry this got so long but it really helped me to be given the information so at least I understood a little. Best of luck. Mary
  • COBRA666
    COBRA666 Member Posts: 2,401

    Welcome
    Sorry to hear that you are going through this but let me reassure you that there are tons of treatments and lots of hope. I will try to answer your question as best I can based on my own personal experience. There's really no short answer so bear with me if I get long-winded. Lymphoma is different from other types of cancers so the staging,while important,is not as crucial. I was diagnosed with follicular NHL ,Grade1,stage 4A and that was before my Bone marrow marrow biopsy. It has something to do with areas of activity on the right and left side of the body, above and below the diaphragm, any additional organ involvement etc. When I had my bone marrow biopsy my Md told me that he would be out of town but his staff would call me with the results. He went on to say that if they told me there was no bone marrow involvement I was to say "OK" and if they told me there was bone marrow involvement I was to say "OK". He said it didn't matter. If and when they treat the lymphoma it all gets treated. He used the example of Leukemia...Is it in the blood in my arm, is it in my leg??? It doesn't matter it is still Leukemia. I think the grade is more important in treating Lymphoma. The grade 1 and 2's are the indolent or slow growing and the 3 and 4's are the faster growing and that determines the type of treatment more then anything else. If you have the slow it's a little more difficult to treat because the drugs need to reach the cancer cells during mitosis or when they are active in order to kill them so if they are growing slowly it's harder and may take longer to get them all. Conversely if the grade is more aggressive it's growing quickly so the cells are very active and the drugs can find them more easily. Which one is better to have? Both have their upsides and downsides but both can be treated effectively. If it is any help I had 50% bone marrow involvement prior to treatment. I am now in complete remission and my bone marrow is clear. There is so very much that can be done. My Md put it this way...."It's not weather I can treat you it's what do I want to use. I have an arsenal as long as my arm." That helped me a lot. It is a long journey and not always fun but it does end and for most of us there is remission. I am sorry this got so long but it really helped me to be given the information so at least I understood a little. Best of luck. Mary

    SAID IT ALL MERRY
    that was not long winded at all. You said it all in a nutshell. Thats how I understood it from my onc. as well. We need all the advice we can get.
  • merrywinner
    merrywinner Member Posts: 626
    COBRA666 said:

    SAID IT ALL MERRY
    that was not long winded at all. You said it all in a nutshell. Thats how I understood it from my onc. as well. We need all the advice we can get.

    Lol
    Hey Cobra,
    I've been keeping tabs on you thorough the postings and it sounds like you're doing great. The old saying "knowledge is power" is so true. I don't claim to have a lot of knowledge, but I do have experience.Information not shared is just a waste of brain space. I know how much it meant to me when everyone on here would share what they knew or had gone through. It was real and much more hopeful then all the statistics on the net so many of which were outdated as you have pointed out. Keep up the great attitude and fight! Mary
  • COBRA666
    COBRA666 Member Posts: 2,401

    Lol
    Hey Cobra,
    I've been keeping tabs on you thorough the postings and it sounds like you're doing great. The old saying "knowledge is power" is so true. I don't claim to have a lot of knowledge, but I do have experience.Information not shared is just a waste of brain space. I know how much it meant to me when everyone on here would share what they knew or had gone through. It was real and much more hopeful then all the statistics on the net so many of which were outdated as you have pointed out. Keep up the great attitude and fight! Mary

    LOL
    Mary, I was a mess when I was first diagnosed as I am sure others were as well. I was going thru all the stats and everything said something different. Thats how I came across this site. A lot of the stats had no dates on them and some are from foreign countries. This site has been very helpful with updates and how people are progressing. You have been on here a lot longer than I have so you are more up to date. I made a post about a week ago about some of the other members that don't post anymore. I am sure they are doing fine, but for some reason they don't post anything to keep us updated. Sure like to hear from them. I see you been on here almost a year and have noticed the absent members as well. Anyway thanks for keeping up with me and I am doing better than I thought I would. I used to hear some horror stories about chemo when I was growing up. They seem to have come a long way in that area. It seems they have come quite a ways in treatment as well. Just wish they could find a way to cure this stuff. The way I understand it is the rituxan attacks the abnormal cells by attaching to them and destroying them. If they could find a way for it to attack the immature abnormal cells then they would have it beat. I am sure they have to be close to this by now. Talking about long winded, Whew. John
  • merrywinner
    merrywinner Member Posts: 626
    COBRA666 said:

    LOL
    Mary, I was a mess when I was first diagnosed as I am sure others were as well. I was going thru all the stats and everything said something different. Thats how I came across this site. A lot of the stats had no dates on them and some are from foreign countries. This site has been very helpful with updates and how people are progressing. You have been on here a lot longer than I have so you are more up to date. I made a post about a week ago about some of the other members that don't post anymore. I am sure they are doing fine, but for some reason they don't post anything to keep us updated. Sure like to hear from them. I see you been on here almost a year and have noticed the absent members as well. Anyway thanks for keeping up with me and I am doing better than I thought I would. I used to hear some horror stories about chemo when I was growing up. They seem to have come a long way in that area. It seems they have come quite a ways in treatment as well. Just wish they could find a way to cure this stuff. The way I understand it is the rituxan attacks the abnormal cells by attaching to them and destroying them. If they could find a way for it to attack the immature abnormal cells then they would have it beat. I am sure they have to be close to this by now. Talking about long winded, Whew. John

    Zevalin
    That's where the Zevalin comes in. Along with Rituxan it takes out all of the B cells except the precursor cells, leaving those baby B's to develop into normal,healthy B cells.
  • COBRA666
    COBRA666 Member Posts: 2,401

    Zevalin
    That's where the Zevalin comes in. Along with Rituxan it takes out all of the B cells except the precursor cells, leaving those baby B's to develop into normal,healthy B cells.

    ZEVALIN
    Mary, I asked about the zevalin at the onc center in Fayetteville,NC. the other day when I went in for round 2 of r-cvp.This is where I get my treatment and they said they don't use it there. I don't understand why if it can be the possible cure. They said it is radioactive and would have to be administered thru the radio lab. Is what you are saying this is the cure drug or just a drug that prolongs remission. Like I said before you are the one thats been on here the longest and I am sure you are well up on this drug. I on the other hand am not to well informed on it. by the way they are building a Cyber Knife wing onto the center for those inoperable cancers. Its all lazer cutting.. Thanks, John
  • merrywinner
    merrywinner Member Posts: 626
    COBRA666 said:

    ZEVALIN
    Mary, I asked about the zevalin at the onc center in Fayetteville,NC. the other day when I went in for round 2 of r-cvp.This is where I get my treatment and they said they don't use it there. I don't understand why if it can be the possible cure. They said it is radioactive and would have to be administered thru the radio lab. Is what you are saying this is the cure drug or just a drug that prolongs remission. Like I said before you are the one thats been on here the longest and I am sure you are well up on this drug. I on the other hand am not to well informed on it. by the way they are building a Cyber Knife wing onto the center for those inoperable cancers. Its all lazer cutting.. Thanks, John

    Ahhh Cobra I will try to explain
    First let me say that Zevalin or any other treatment is not the only game in town. We all must believe in and then do what are Md's feel is best for our own unique situation. That being said I was offered the Zevalin therapy after completing 6 cycles of R CHOP and achieving complete remission. I had the choice of deepening or prolonging my remission by Rituxan maintenance every 3 months or the Zevalin. Very tough call for me. Both have success rates and are effective. Zevalin as I was told is showing a longer time in remission as via European Studies over the past several years and recently studies here. They feel they are close to being able to use the "cure" word with this therapy. I hope so and we shall see. There are people on here and I am sure elsewhere that are 7 or more years out with no recurrence. That is as far as they can go because it's usage began in 2002 in the US. In the beginning it was used for people who were refractory or not responding well enough or at all to standard therapies. In the last few years it's usage has been approved for post chemo patients who achieved remission. Most recently it has been approved as a first line treatment. A very simplified method of action, as I understand it would be as follows. The Zevalin is given immediately following a dose of Rituxan. The Rituxin acts as a guided missile bringing the Zevalin to all of the affected B cells which are then destroyed. The Zevalin thanks the Rituxin but decides that it wants to play it really safe and destroy all of the B cells and let the body start over. The precursor cells are not harmed as they have no identifying markers on them. They will now fairly rapidly become normal healthy B cells because the body is calling for B cells please. The potential for unhealthy cells growing is greatly decreased because none of the old family members were left. Again really oversimplified but that is how I understand it. It is not offered everywhere only at major cancer centers that have the ability to do it. I just happened to be in the right place at the right time or at least I surely hope so. I do NOT want to step on anyone's toes here or challenge their treatments. This is in no way meant to do that. I had pretty much planned on going with the Rituxan maintenance and then was offered a choice that was really hard to make. I pray it was the right one for me. Is it without potential side effects? Of course not, none of the options are. I was told the potential for both of my options and it ended up being a horse apiece.If this interests you there is a website that explains it and why it's not available everywhere etc. It's www.lymphomabook.com. Again everyone have faith in your choices this was just mine. Sincerely, Mary
  • COBRA666
    COBRA666 Member Posts: 2,401

    Ahhh Cobra I will try to explain
    First let me say that Zevalin or any other treatment is not the only game in town. We all must believe in and then do what are Md's feel is best for our own unique situation. That being said I was offered the Zevalin therapy after completing 6 cycles of R CHOP and achieving complete remission. I had the choice of deepening or prolonging my remission by Rituxan maintenance every 3 months or the Zevalin. Very tough call for me. Both have success rates and are effective. Zevalin as I was told is showing a longer time in remission as via European Studies over the past several years and recently studies here. They feel they are close to being able to use the "cure" word with this therapy. I hope so and we shall see. There are people on here and I am sure elsewhere that are 7 or more years out with no recurrence. That is as far as they can go because it's usage began in 2002 in the US. In the beginning it was used for people who were refractory or not responding well enough or at all to standard therapies. In the last few years it's usage has been approved for post chemo patients who achieved remission. Most recently it has been approved as a first line treatment. A very simplified method of action, as I understand it would be as follows. The Zevalin is given immediately following a dose of Rituxan. The Rituxin acts as a guided missile bringing the Zevalin to all of the affected B cells which are then destroyed. The Zevalin thanks the Rituxin but decides that it wants to play it really safe and destroy all of the B cells and let the body start over. The precursor cells are not harmed as they have no identifying markers on them. They will now fairly rapidly become normal healthy B cells because the body is calling for B cells please. The potential for unhealthy cells growing is greatly decreased because none of the old family members were left. Again really oversimplified but that is how I understand it. It is not offered everywhere only at major cancer centers that have the ability to do it. I just happened to be in the right place at the right time or at least I surely hope so. I do NOT want to step on anyone's toes here or challenge their treatments. This is in no way meant to do that. I had pretty much planned on going with the Rituxan maintenance and then was offered a choice that was really hard to make. I pray it was the right one for me. Is it without potential side effects? Of course not, none of the options are. I was told the potential for both of my options and it ended up being a horse apiece.If this interests you there is a website that explains it and why it's not available everywhere etc. It's www.lymphomabook.com. Again everyone have faith in your choices this was just mine. Sincerely, Mary

    ZEVALIN
    Mary, that sounds pretty plain to me. Thanks for the info. I am sure everyone else will be reading the post as well. I know I do when I see a new post. Like we were saying before this site is our best source of info. I am going to have to check into why its not offered at the center where I get my treatment. Its not a small town center either, Fayetteville is a big place and growing. Not far from Fort Bragg Army Base. I will check out the website as well. Thanks again for the info, John
  • allmost60
    allmost60 Member Posts: 3,178
    Thank you all...
    Thank you so much for all of the great feedback. I agree with the statement that knowlege is power, but one thing I have learned is that reading too much, (especially late at night) can really throw me into a scary dark place in my thinking. Last night I read all about the bone marrow testing/biopsy and by the time I was done exploring ump-teen different web sites I had myself so wound up that I couldn't begin to sleep. I am a real wimp when it comes to pain and as soon as I read that I would be awake for the procedure and would hear a crunching sound when a little piece of the bone was extracted, I said "no way" I want to be put to sleep and wake up when it's all over! Then when I read about all of the different drugs and treatments and subsequent possible side affects, I totally freak out and once again say to myself "no way" the side affects of this stuff is going to make me feel like crap. I feel so good right now and can't stand the thought of feeling crappy because thats what the treatments make you feel like. When all of you first started out did you have similar re-actions? My mind has been in a whirlwind for the last month and if it wasn't for my physical health being so good, I think I would of surely gone nuts by now...ha! I have even considered telling my doctor to "lets just wait and see what happens" and not do any kind of treatment...is this nutty thinking or what? So many questions...ya know?
  • COBRA666
    COBRA666 Member Posts: 2,401
    allmost60 said:

    Thank you all...
    Thank you so much for all of the great feedback. I agree with the statement that knowlege is power, but one thing I have learned is that reading too much, (especially late at night) can really throw me into a scary dark place in my thinking. Last night I read all about the bone marrow testing/biopsy and by the time I was done exploring ump-teen different web sites I had myself so wound up that I couldn't begin to sleep. I am a real wimp when it comes to pain and as soon as I read that I would be awake for the procedure and would hear a crunching sound when a little piece of the bone was extracted, I said "no way" I want to be put to sleep and wake up when it's all over! Then when I read about all of the different drugs and treatments and subsequent possible side affects, I totally freak out and once again say to myself "no way" the side affects of this stuff is going to make me feel like crap. I feel so good right now and can't stand the thought of feeling crappy because thats what the treatments make you feel like. When all of you first started out did you have similar re-actions? My mind has been in a whirlwind for the last month and if it wasn't for my physical health being so good, I think I would of surely gone nuts by now...ha! I have even considered telling my doctor to "lets just wait and see what happens" and not do any kind of treatment...is this nutty thinking or what? So many questions...ya know?

    TREATMENTS
    First of all you are not thinking nutty. You are frightened and the rest of us were too. You feel so alone even though you have people around you, right. I had the bone marrow biopsy and was given a local to kill any pain. It did kill the pain ,but you still feel the pressure. I did not hear any crunching. When the dr. was removing the needle I felt the pressure and pulling and I got very weak. My blood pressure dropped real low. I am a wimp too I guess. I never looked at the needle, I did not want to see it because I think that would have made it worse. It was actually painless except for the pressure. Yes, the chemo does take a lot out of you, but sometimes reading those web sites will really scare you. I think sometimes they give the worse reviews. I did the same thing with reading all the web sites and it scared me too. I very rarely get on them anymore. Most are outdated anyway. I depended on people that have gone through this on this site, like Merry and others to see me through. She is a world of info. Others are as well ,but Merry sticks out in my mind the most. Stay away from those statistic websites, because everybody is different. They want to do the bone marrow biopsy to set your stage. If it is in your bone marrow then they will want to start treatment soon. Thats the same thing they did to me. They waited till it got to the marrow. It doesn't make sense. I guess because the treatment is the same they just hold off till it reaches that point. The staging of lymphoma is not as crucial as it is in other types of cancers. Lymphoma will be lymphoma no matter where it goes in the body. The staging is just used to show where it has spread too. I do remember hearing as long as it does not get into the brain all the treatment is basically the same. IF IT IS STAGE 4 YOU WILL REALLY HAVE NO CHOICE BUT START TREATMENT TO PUT IT IN REMISSION. Hope I did not scare you anymore than you already are, but I was in your exact spot about 3 months ago and I was not aware this site even existed and those websites were all I had to go on at the time. I am now just finishing my 2nd round of r-cvp. I have been very fortunate in my blood counts being normal. No sickness. I did have lower back pain due to the neulastra shot to stimulate the blood cells. They said that was normal. I did feel worn out after the chemo as I am sure everyone does. I do have what is called chemo brain. Can't remember s--t!!! You will be fine and we will be here to help you thru all this. I know its a lot to say don't worry with all that is all on your mind. John
  • COBRA666
    COBRA666 Member Posts: 2,401
    allmost 60
    I have you on my friends list because you have almost exactly what I have.If you don't mind saying what is your first name? Mine is John and I live in nc. If you rather not say thats ok.Its just we are like one big family here.
  • allmost60
    allmost60 Member Posts: 3,178
    COBRA666 said:

    allmost 60
    I have you on my friends list because you have almost exactly what I have.If you don't mind saying what is your first name? Mine is John and I live in nc. If you rather not say thats ok.Its just we are like one big family here.

    My name is Sue
    I have no problem giving out my name...I go by Sue or Susie. I live in Yakima Washington, been married 31 years and retired 8 years ago from working for 33 years. I'm active and relatively healthy except for the off and on feeling of tiredness. Everything is really new to me and I'm just now coming to terms with having cancer. It's such a roller coaster of emotions and hopefully this group will be the help I need for accurate info and helpful support. So far I am sooooo impressed with you all.
  • dixiegirl
    dixiegirl Member Posts: 1,043
    allmost60 said:

    My name is Sue
    I have no problem giving out my name...I go by Sue or Susie. I live in Yakima Washington, been married 31 years and retired 8 years ago from working for 33 years. I'm active and relatively healthy except for the off and on feeling of tiredness. Everything is really new to me and I'm just now coming to terms with having cancer. It's such a roller coaster of emotions and hopefully this group will be the help I need for accurate info and helpful support. So far I am sooooo impressed with you all.

    BMB
    I have been very fortunate and been completely knocked out all 3 times I've had my bone marrow biopsies. I was only really sore the first time, the last 2 I didn't feel anything. The first time when I got home I cracked up..........they put a mickey mouse bandaid on my butt! LOL

    It'll be ok. I know you are scared.

    Take Care,
    Beth
  • merrywinner
    merrywinner Member Posts: 626
    allmost60 said:

    Thank you all...
    Thank you so much for all of the great feedback. I agree with the statement that knowlege is power, but one thing I have learned is that reading too much, (especially late at night) can really throw me into a scary dark place in my thinking. Last night I read all about the bone marrow testing/biopsy and by the time I was done exploring ump-teen different web sites I had myself so wound up that I couldn't begin to sleep. I am a real wimp when it comes to pain and as soon as I read that I would be awake for the procedure and would hear a crunching sound when a little piece of the bone was extracted, I said "no way" I want to be put to sleep and wake up when it's all over! Then when I read about all of the different drugs and treatments and subsequent possible side affects, I totally freak out and once again say to myself "no way" the side affects of this stuff is going to make me feel like crap. I feel so good right now and can't stand the thought of feeling crappy because thats what the treatments make you feel like. When all of you first started out did you have similar re-actions? My mind has been in a whirlwind for the last month and if it wasn't for my physical health being so good, I think I would of surely gone nuts by now...ha! I have even considered telling my doctor to "lets just wait and see what happens" and not do any kind of treatment...is this nutty thinking or what? So many questions...ya know?

    Can relate so much Sue!
    I was the exact same way except I wouldn't even look at any websites or anything in the beginning because it scared me so bad. I wanted to wait until I knew exactly what my diagnosis was and how it would be treated before I investigated too much. I pretty much went with what my Md was telling me and a lot of blind faith. I often refused to read up on the side effects of drugs that would be used because I just knew I would then have them all. Lol, I definitely lived on a need to know basis. Just accepting that I had cancer was enough for me. And I also had no symptoms that I was aware of and now they were going to make me sick!! I was also very worried about the bone marrow biopsy but in my case my Md said that he puts all of his lymphoma patients under light sedation for this because with lymphoma they have to take a biopsy from both sides of the pelvis. He said I would not feel or remember anything about the procedure and he was absolutely correct. I don't know why some do it this way and others are awake. I would ask about that for sure. It's not like a general anesthetic where you are in recovery for hours etc. From start to finish the whole thing probably took 1 hour and I was up and ready to go. In fact I wore loose fitting elastic waist pants and didn't even have to get undressed! I think your reactions are absolutely normal. It's such a shocker. I think that is why everyone here is so helpful and willing to share their thoughts and experiences. We all remember only too well how very frightening it all was and hate to see someone else in that lonely, scary spot. That is why this site is such a Godsend. When the people here tell you it will be OK or you can do it, they say this because they know for sure. They have lived it. All the best to you and keep us posted. Mary
  • COBRA666
    COBRA666 Member Posts: 2,401
    allmost60 said:

    My name is Sue
    I have no problem giving out my name...I go by Sue or Susie. I live in Yakima Washington, been married 31 years and retired 8 years ago from working for 33 years. I'm active and relatively healthy except for the off and on feeling of tiredness. Everything is really new to me and I'm just now coming to terms with having cancer. It's such a roller coaster of emotions and hopefully this group will be the help I need for accurate info and helpful support. So far I am sooooo impressed with you all.

    Sue
    Sue, I sit and wrote you a long discussion and when I went to put it on the site it had timed out. Because of the chemo brain setting in I can't even remember what I wrote. First of all you and I are in the same age group. Remember when we were growing up and when we heard the word cancer.It was a death sentence back then. Its not that way anymore. While we were out working they were working on treatments and cures. Unfortunately some cancers are still very deadly. What we have is treatable and in some cases cureable. I know Mary will read this and if I am wrong about this please let me know.Mary has helped me a lot. My 1st treatment was over 3 weeks ago and when I came home and laid on the bed later that night I could actually feel where the tumors had shrunk in my stomach. They were still hard to the touch but they were smaller and flatter. The onc. nurse said the chemo will melt the tumors. Just finished my 2nd round a couple of days ago and the same thing. they feel smaller and a little bit softer. Are yours in your abdomen as well? and if they are can you feel them? John
  • allmost60
    allmost60 Member Posts: 3,178
    COBRA666 said:

    Sue
    Sue, I sit and wrote you a long discussion and when I went to put it on the site it had timed out. Because of the chemo brain setting in I can't even remember what I wrote. First of all you and I are in the same age group. Remember when we were growing up and when we heard the word cancer.It was a death sentence back then. Its not that way anymore. While we were out working they were working on treatments and cures. Unfortunately some cancers are still very deadly. What we have is treatable and in some cases cureable. I know Mary will read this and if I am wrong about this please let me know.Mary has helped me a lot. My 1st treatment was over 3 weeks ago and when I came home and laid on the bed later that night I could actually feel where the tumors had shrunk in my stomach. They were still hard to the touch but they were smaller and flatter. The onc. nurse said the chemo will melt the tumors. Just finished my 2nd round a couple of days ago and the same thing. they feel smaller and a little bit softer. Are yours in your abdomen as well? and if they are can you feel them? John

    Tumor location
    The tumors that I can physically feel are in my left side groin..(6 tumors)... one was removed for biopsy, so now there are 5 remaining. They don't hurt at all and don't bother me. I cannot feel the ones in the back of my abdomen, but I know they are there from the CT scan results. The 3 lumps on the left side of my neck are the ones that bother me the most. When I touch them they are very hard and tender to the touch. Plus, they are obvious when looking in the mirror which immediately creeps me out. It's just a constant reminder that cancer is growing in my body. I'm getting better each day with that kind of thinking and most of the time I am able to put myself in check before I start the whole panic routine. I truely enjoy all the feedback...it's very comforting..."Thanks"...Sue
  • COBRA666
    COBRA666 Member Posts: 2,401
    allmost60 said:

    Tumor location
    The tumors that I can physically feel are in my left side groin..(6 tumors)... one was removed for biopsy, so now there are 5 remaining. They don't hurt at all and don't bother me. I cannot feel the ones in the back of my abdomen, but I know they are there from the CT scan results. The 3 lumps on the left side of my neck are the ones that bother me the most. When I touch them they are very hard and tender to the touch. Plus, they are obvious when looking in the mirror which immediately creeps me out. It's just a constant reminder that cancer is growing in my body. I'm getting better each day with that kind of thinking and most of the time I am able to put myself in check before I start the whole panic routine. I truely enjoy all the feedback...it's very comforting..."Thanks"...Sue

    TUMOR LOCATION
    Sue, mine are mostly in the abdomen. one was 6cm and the other was 5cm. I had some smaller ones as well around 2-3 cm. Did they say the size of the abdominal tumors. Darn, I hate that word. I never really checked my stomach before I was diagnosed. Never any reason too. I did notice a tightness in my lower back when I was driving though. Never gave it any though either. I had the biopsy and it was a needle aspiration thru the back and never felt a thing. It came back NHL follicular grade 1 indolent. That scared the heck out of me. I did not know anything about this site at the time and was going nuts checking all the websites. I got a different answer every time. Thats even scarier yet. Never felt so alone in my life. Then I found this site and don't really know how either. I started posting right away. It only took a little while and I was getting reponses. There are a lot of great people on here that will see you thru this. We know exactly what you are going thru, we have all been there at one point. I could name off several people that have reponded to my post, but I would be here all night. They are all great people. If I don't know something I just post it and I will get a reponse and so will you. John
  • COBRA666
    COBRA666 Member Posts: 2,401

    Can relate so much Sue!
    I was the exact same way except I wouldn't even look at any websites or anything in the beginning because it scared me so bad. I wanted to wait until I knew exactly what my diagnosis was and how it would be treated before I investigated too much. I pretty much went with what my Md was telling me and a lot of blind faith. I often refused to read up on the side effects of drugs that would be used because I just knew I would then have them all. Lol, I definitely lived on a need to know basis. Just accepting that I had cancer was enough for me. And I also had no symptoms that I was aware of and now they were going to make me sick!! I was also very worried about the bone marrow biopsy but in my case my Md said that he puts all of his lymphoma patients under light sedation for this because with lymphoma they have to take a biopsy from both sides of the pelvis. He said I would not feel or remember anything about the procedure and he was absolutely correct. I don't know why some do it this way and others are awake. I would ask about that for sure. It's not like a general anesthetic where you are in recovery for hours etc. From start to finish the whole thing probably took 1 hour and I was up and ready to go. In fact I wore loose fitting elastic waist pants and didn't even have to get undressed! I think your reactions are absolutely normal. It's such a shocker. I think that is why everyone here is so helpful and willing to share their thoughts and experiences. We all remember only too well how very frightening it all was and hate to see someone else in that lonely, scary spot. That is why this site is such a Godsend. When the people here tell you it will be OK or you can do it, they say this because they know for sure. They have lived it. All the best to you and keep us posted. Mary

    YOU'RE THE BEST
    Mary, you are the soul and inspiration for a lot of us. You are the best, Thank You John