I've had two. The first one, I had an IV of Versed. I slept through it and it wasn't a big deal at all. The second one, my doctor couldn't use Versed so I was given a Valium and Benedryl. Neither worked. It was by far the worst procedure ever. It hurt so bad I was drenched in sweat. I will NOT have another without Versed. I don't care what I have to do to get it.

I'm sorry you had to go through that. I hope you are feeling better now.

If I have to do this again, next time, 3 percosets and 6 oz. of rum. My younger brother, who is a plastic surgeon with hairy cell leukemia for 15 years, has had 10 bone marrow biopsies. He just takes some anesthesia from his office for this lovely procedure.

It's just funny that the person who ran the lab a Gerogetown, along with a well known doc at Johns Hopkins, both said "we don't have any problems with the procedure". My view ... because it's not being done to you!

Thanks, Lexisgirl, for reinforcing that I am not nuts. This one is not fun!!!

If you have to do it again, ask them for Versed. They shouldn't have a problem. Because they are going through your bone, standard medications aren't really going to help. Versed disconnects your pain response so you don't identify with it (or at least that is what I was told). I've had several surgeries with Versed instead of general anesthesia. It is a god's send.

Since I am sure that they will be doing other "not nice things" to me along the way, thanks for the tip. I'll check with my brother as to whether he uses this, too. I am definitely not a fan of unnecessary pain (actually no pain is necessary).

I too had a negative bone marrow biopsy a few weeks ago. The procedure was very painful, I did not take anything, mistake number one. I thought that I was going to go through the roof. 6 people in the room, including My husband. i thought I yelled but he said I just made a few noises. Next time Versed, I will insist on it. I will be starting Rituxzn very soon and I am so scared about that first treatment. Any suggestions. Stage II not one symptom.

Sorry to hear that you found this procedure "less than pleasant". What was your actual diagnosis and grade? It sounds as if it was a high grade, necessitating immediate treatment. If it wasn't ... did you get a 2nd opinion? I have stage 3, grade 1, follicular lymphoma, with good blood work and no symptoms, so the course of action is watch and wait. You need to know that you have my support as a brother in the club.

I would question if "watch and wait" would be prudent for you. It is viable for some without symptoms but certainly not everyone. Rituxan certainly helps but seems to require ongoing treatment. It is also very expensive ($15,000 a week or so). I got a nerve disease while on Rituxan treatments. That is way worse than cancer.

As far as the Rituxan treatment, they will have you take 2 tylenol and then give you an infusion of Benedryl to help with the side effects. They will drip the Rituxan very slowly. It could easily take 7 hours for your infusion so take things to do and snacks. But the Benedryl will make you loopy so nothing that requires too much focus. If you have anything "weird" happen during your infusion, let the nurse know right away so they can adjust your infusion. It is easily tolerated by most but dripping too fast can cause more side effects. I usually went home and went to bed the rest the day after my infusion. Sometimes I got a headache. Drink lots of water too. The infusion took most my day but I was able to work the other 4 days a week full time.

Best of luck for you.

I was just diagnosed with follicular lymphoma. Scheduled for the CT Scans and bone marrow biopsy. My oncologist talked to me about Versed but stated that she thought I would do fine without it. She said that the pain is caused by extracting the marrow and that this lasts for about 15-20 seconds. I opted not to medicate. After reading the discussion, sounds like that might be a mistake. I have a really high pain tolerance. I have swollen lymph nodes above and below my waist and and on both sides. I have been told that the marrow is more than likely involved. The only symptom I have is fatigue and a weird sensation on the left side of my abdomen under my ribcage.

I am so glad to have found an online support group. I'm a bit overwhelmed by the diagnosis and am scrambling to gather information. I have a great deal of trust in my oncologist. I am all for the "wait and see" idea and using chemo only if my symptoms become physically unmanageable. I'm terrified. Maybe I won't be next week but right now I am silently freaking. I oversee a social service agency and teach college classes. Have no idea how my health is going to impact my ability to work. I'm freaking about that too. Sorry to ramble.

Stormywhalen: Take the Versed!! I took 2 perocsets and 4oz of rum (didn't touch it). Also, definitely go the www.lymphomasurvival.com . It is a follicular NHL support group with 2500 very active members, and has over 1000 pages of quality researched text on our illness. This site and the one that I mentioned have been invaluable in my dealing with the situation. If you ever want to talk about it, I'd be happy to talk directly with you. I'm only 4 months ahead of you. It's been an interesting journey, but information will only help you out. Good luck.

Stormywhalen: More on your last post. I am a senior statistician with the federal gorvernment. In my positon, I have lengthy papers that I have to write. Upon my diagnosis, and when I found out that I had this in 8 different places in my body, I had a lengthy discussion with my division chief. It turns out that he had had prostate cancer 12 years ago, and he immediately asked what did I need. I really needed some liberal teleworking ability on days that I had medical appointments. He approved, which took a lot of stress away. I have talked to co-workers, but I was concerned that, even though it is highly illegal, that a potential promotion could be given to someone else, "who was not sick". It took me about 3 months to pull my head out of my rear end. Only now, am I beginning to see glimpses of daylight. At the same time, my focus was in the toilet. I could excel at any short term task, but finishing a major paper that I was working on was almost impossible (PS I just turned in a draft for initial review this past Thursday). Not that any of this will make you feel better, it really has been helpful to me to talk with other "club" members. There are things that I will not accept from a person who has not walked in my shoes, but I will accept these same things from a "club" member. I really liked my father (who should know better) telling me that I should try to not think about this. SURE, would you? Anyway, just thinking about your situation, and wanted to reach out again.

DaveVA: Thank you so much for your information and feedback. I really appreciate it. I was told about my situation last week so I am vacillating between calm resolve and total freaking at this point. I have two children (22 & 24) who I have had to deliver the bad news to and I am very concerned about protecting them and maintaining a calm exterior so that they stay the course in their lives. They live in New Jersey and want to come home. I have discouraged them from doing this.

I will definitely check out the website. Thanks for the offer to chat. I may take you up on this.

It was also good to hear about your work situation and I am glad that it worked out well for you. That's so important. After all, we define ourselves by what we do and we certainly need the income and insurance to support our illness.

I report to a Board of Directors. I am afraid that if they know what is going on, they will jump to the conclusion that I am dying and plan for my replacement. I have a solid relationship with all of Board members and I do a really good job but . . . as I am sure that you know, people hear the big "C" and they begin to see you not as a living person with a future but a person counting down to death.

I know that in a week or two, my perspective will be much sounder, but right now all I have are questions and worries. Thanks again for responding.

Stormywhalen: First, "a week or two" ... try a month or two, actually three (as long as you get there).

On the calm resolve: My children are 27, 31, 44, and 47 (with 3 grand children 5, 9, 10). I'll never forget after I got the groin mass cut out, which produced the initial diagnosis, and had my PET scan, my wife and I were driving to my initial oncology appt., when I asked her what she thought. She told me that she thought that they had "gotten it all" when they removed the mass, and that I was clean now. I didn't tell her my thoughts (that they had the wrong patient's chart, and I never had it in the first place). Anyway, during the appt. the oncologist took out the PET scan report (2 pages filled with small print) and proceeded to read all of the places in my body that the NHL was located. My reaction, and its been the same always, "OK, so what do we do now?" (PS this followed my comment to the surgeon "Does this mean that I'm going to lose my hair?" (I shaved my head 5 yrs. ago). When we got home that night, my wife asked me what I was thinking while he was reading the report. I responded nothing. I am numb. I asked her what she was thinking. She said that she felt like he had kicked her in the stomach. The reason I am telling you this, is that, at least for me, I beleive that in a sense this may be tougher on the people who are close to you. Me ... I'm only the patient. Don't get me wrong, for 3 months I felt like I had my head in a vice. Depression ... probably. This is an all encompassing thing. BUT, I really am mentally getting a bit better. I actually have had a couple of moments where I had "fun" again, recently. There definitely is a process, and for me I have found it very theraputic to talk to others, particularly other members of the club. I know this is tough on my family, but at this point, and it may be egocentric, but this has to be "about me". I am still asymptomatic, and have been able to maintain my workouts, too (very important). The rest, I am trying to deal with.

When I told my division chief about this, I said that it is really important that work successfully at my job, and that I continue my career growth. His comment to me was "You do, and you will". In fact, on numerous occasions, he has called me into his office, only to ask me how I'm doing.

You'll figure all of this out, at your own pace. Just know that there are others out there that are walking in similar shoes.

My goals: Deal with this ... use my experiences to help others out with this nasty stuff ...., and eventually, die of something else in my 90s.

Have a better day.

I highly recommend the Versed. I have a very high tolerance for pain and the Versed is really the way to go. I don't want to gross you out but they are punching into a bone. You want to be in an altered state of reality for that. There is simply no way to numb a bone. So disassociating your brain from pain will help.

As far as how scary the news of cancer is, I think we all understand and have been there. I was diagnosed in 2003. I have had 2 series of Rituxan and have been in remission for 6 years. I tell you this because there is very good medications for NHL and it is not a death sentence anymore.

The tests they are doing for you now will help fine tune your diagnosis...which will help them decide a treatment plan. I know it is scary but it is very treatable and it is very likely you will be able to continue working successfully. I know I have been able too. I have memory issues but I've learned to keep lists.

Please let us know what we can help you with. We have a great support network although it can be a little quiet....know that we are all here to support each other.

Hello Stormywhalen! A bit late to add to this discussion but I live in Cape Town, South Africa so the time difference is a problem.
I know exactly what you're going through - it's like you are here on this planet but not. Because Lymphoma doesn't have much in the line of symptoms, when you are told you have it, it's like being slapped through the face with a cold fish.

With regard to having medication for the bone marrow biopsy (if you haven't already had it) is don't be brave. I too can deal with pain and had my first one without meds - the second one with and honestly just opt for the medication.

I am 59 and was diagnosed in January 2011 with Follicular Lymphoma grade 1, Diffuse large B-cell stage 4 (40% in the bone marrow). I had 8 cycles of R-Chop (combination of Rituximab and Chemo). My second bone marrow biopsy was clear! Large lymph nodes in all 4 quadrants and they have shrunk!

I have 4 sons aged 35 - 27 and my husband (he is the eldest, so I have 5!) How have they dealt with it so far? Denial most of the time! I have learnt to accept the fact that if someone hasn't been down this road they simply cannot understand and we cannot expect them to.

Although this site is rather quiet, the ones here to support are steadfast and will help you through your journey. Being here has helped me through many a bad moment.

Thinking of you with understanding.

Hey dave. I had a bone marrow biopsy taken from the back of my hip near the spine area. My doc said it is the best area and less pain because the bone is thin there. I don't know where they extracted yours from but they numbed mine with a needle injection.(maybe novicaine) It honestly didn't hurt just a lot of pressure. Maybe they didn't do yours right. My doctor said if hurt he would give another shot to numb it more but i was fine. Hope this helps.