My Journey....so far....and we're just getting started

Physical Health Cancer
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Hello. My name is Amy and I just found out I have Diffuse Large B Cell Non Hodgkins Lymphoma CD20+ Primary of the Bone. I do not know the stage yet. Here is my story.

August 2, 2010: I went to an Orthopedic Doctor because I was having some pain in my left lateral tibia (inner part of leg, under knee). An Xray was performed, which came back normal. Since I have been active in exercise, my physician thought the pain was due to inflamed Burrso muscle to to excersise. He told me to stay off of it, take IB Profin and it should go away on it's own.

Sept 14th it was still hurting..now with popping/clicking sounds that ease the pain some but am now unable to put much weight on left leg. I called and got an appointment for September 20.

September 20, 2010: Physician examines me, asks where it hurts, decides I may have a torn meniscus and sends me for an MRI. I was lucky enough to get the MRI on the same day with and without contrast. MRI took about 1 and 1/2 hours and then I was released.

September 21, 2010: I am at work and I receive a call. It is my Orthopedic Physician. My MRI results are back and "There is something in your bone that I've never seen before and we need to get a Biopsy". I work for the hospital of which is also treating me so I have legal access to my records. So I pull my MRI up and I see that they are questioning Lymphoma. I work in a Cancer clinic (ironic huh?) and so I am very scared now.

September 28, 2010: CT guided Biopsy of the Left Tibia. Since this was a biopsy of the bone, I had alot of pain and was unable to bend my knee very much at all. I was very anxious to find out the results as we all were when we got that diagnosis so I checked my records for results on a daily basis.

On October 8, 2010: I couldn't take it anymore. I work right down the hall from Orthopedics so I walked down and asked why it was taking so long to get the results back. Since I work in a Cancer Clinic I know it should only take about 5 working days. I was told to come in to see the Physician first thing Monday, October 11, 2010. Of course, I knew what that meant..noone gives good news in person....and they definately dont want to give bad news over the phone...so I cried..again!

October 11, 2010: At my appointment, waiting for results..knowing what he is going to say..to my surprise, he comes in and my bone has so much nectrosis, they were unable to get a good sample. I now have to have an open bone biopsy.

October 12, 2010: Open Bone Biopsy procedure preformed. I got really sick from the antithesia and was kept for a little over 12 hours before being released.

October 25, 2010: Results took about 10 days to come back and again, inconclusive due to "crushed artifact". Ortho is now going to send me to Hematology Oncology. He knows I'm aware of what they are looking for. He knows where I work and he knows I am very nervous to get going with whatever we need to do.

October 26, 2010: I am in severe pain. not sure if it is from the biopsies, or the actual tumor in my bone. I call Ortho and ask them and they tell me that the tumor can cause severe pain. I get some pain meds but they dont really work, but I take them anyhow cause at least they are a tiny bit of relief.

October 27, 2010: I get a call from Ortho with my appointment for Hematology Oncology. I have been scheduled to see Hem/Onc for November 3, 2010.

November 3, 2010: Hematology Oncology wants to start staging even though they are not sure what type of lymphoma it is, or even if it is lymphoma..but he is pretty sure it is... so I get appointments for CT Scans,(which show nodes in my abdominal area, and neck area) Bone Marrow Biopsy (which comes back clean, no sign of cancer or infections,) and Whole Body Pet Scan (which shows only the Tibia that is affected.)

November 17, 2010: Late at night, SEVERE pain! Taking a bath in HOT water just to get some pain relief, ever hour or so.. I email my Hem/Onc Physician and tell him how bad the pain is and describe it to him and ask him to call me.

November 20, 2010: Hem/Onc phsycian decides to write me a script for some stronger pain meds....they do the job! I am still hurting but I can now function.

December 1, 2010: I have a follow up with Hem/Onc Physician. States that all looks good...it is primary to the bone but we have to find out what exactly it is so we can treat it correctly. He is sending me back to Orthopedics. I have to have another open bone biopsy.

December 13, 2010: I see Ortho and we schedule Open Bone Biopsy for next day.

December 14, 2010: I have open bone biopsy. This time they took precaution on the nausea from Antithesia and I did fairly well this time. I was released by noon.

December 21, 2010: I looked into my Electronic Medical Records to see if my results are back yet. I am scheduled to see my Hem/Onc Physician on Decemeber 22, 2010 (today) and wanted to make sure my results are back since this appointment is all about that, and they are back and 4th biopsy is a hit! I finally have a confirmed diagnosis. My Pathology report states I have Diffuse Large B Cell CD 20+
So, I hopefully find out what stage I am at my appointment. I hopefully find out what type of treatment I will be having and we can schedule that and get this started. By the time I get started, we will have spent a total of 5 months trying to get my diagnosed. I am very happy to FINALLY have a diagnosis! It's been a rollercoaster ride, but one I dont plan on giving up on! I plan on fighting this and kicking it's ***!

Hugs,
Amy

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Hi Amy, Wow! You have been on quite a ride these past several months! It took awhile to get my diagnosis. Went to doctor in August after finding a lump on left side of my neck. Was referred to a surgeon and it took a month to get into see him, had surgery at the end of October and got the results from Biopsy the next week. Started chemo on Dec 6th. This website has been so helpful to me, you came to the right place for information and support!! I'll be thinking of you and sending best wishes for a complete recovery!!!

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pumpkin1959,
Wow you've had a wait too! Sorry it took so long to reply, I've been really tired lately! I've not even started anything yet. I hope I'm not getting sick. Anyhow...it sounds like you've had quite the waiting game too!..... Thank you for thinking of me. I just told my children last night which was a huge release for me! keeping this big of a secret from my family is hard, we are such an open family and dont really hide anything from each other.... I think that might have had something to do with me feeling tired! Secrets can wear you down, but that part is over now! Got good news..kinda.. I finally have a diagnosis...
Diffuse Large B Cell Lymphoma, Primary to Bone. I will be starting Chemo Wednesday. I go tomorrow for my Port-A-Cath. Then I will get admitted to the hospital and have my antibody.... I will stay over night for my first dose of Antibody to make sure I do ok and dont have side effects or if I do...I'll be where I need to be so they can help me. Then the next day when they release me, I will go to the Chemo clinic to recieve my first dose of Chemotherapy. I will be receiving R CHOP. Sounds like that's the standard protocol for Lymphoma. I was told I will get sick. but they will give me anti nausea medication, and my hair will fall out at 3 weeks and I should go ahead and just shave it all off... I dont care about my hair.. I just want to get better! Like you all, I have a family to care for! we all need to get better! Heres to kicking Lymphoma's ***!!!!!
My wish for the new year is that we are all survivors and we are all going to go into remission!!!!
Hugs and Love to everyone!,
Amy

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Hi Amy

I just my diagnosis of NHL but primary to a lymph node and involving the skin. I think the scariest thing I have been through is the bone biopsy. I to am following the R-CHOP protocol. I am more scared of the chemo than the Cancer. Hang in there and my thoughts and prayers are with you.

Mike

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Mike,
Have u started chemo yet? I wasn't scared of it at all because I work in a cancer clinic. I see this everyday. I help people everyday on a clerical level but sometimes our nurse does need help or our patients do need someOne to talk to and I've always been there even though clinically I wasn't sure to the exact extent what they r going through but now I do. I am in the hospital as I type. I am receiving the rotuxan as we speak. I had a horrible reaction to the medicine so they had to stop it and give my body a break. But then a few hours later they started back up again and now I'm fine. It's a very small chance of having a reaction. But it was not fun. I hope if you've not started chemo yet that you do not have any reactions. But do know. The hospitals wil take great care of you and if this is what We have to go through to get better then We will do just that. God has a plan for each of us. If you are a believer or not I will pray for each of you tonight. You are all in my thoughts! I did not post this to scare you. From what I understand this part was the worst and that's over so we can do this.

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I have started my chemo. I to had a reaction to the rituxin. I started to ich on top of my head and then breakout in a rash. They stopped the medication and gave me some meds and then restarted about an hour later It was interesting to note that the affected area was where the cancer was located via PET scan earlier. I also had a mass on my left temple that measured about 5cm x 4 cm x 5cm. Over a perios of 5 days after the chemo it literally melted off my head. I am not afraid of the Rituxin part but the CHOP protocal they are using. I am a Registered Nurse and have seen in the past some negative reactions to the CHOP treatment. I think about the CHOP and feel as though I am going to sufficate. I to am a believer and pray for guidance, direction, strength and healing. I will do the same for you.

God Bless

Mike

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Hey Mike,
Just thinking about you… how are you feeling lately! I hope you are well!!!
Hugs,
Amy

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Thank you mike! I sometimes think that us working in this field is a blessing. But then things come up that we have to go through such as this and the knowledge is no longer power, but turns us to fear. Inthese instances I wish I was a cashier haha. I am so glad we r both through with the rituxin. I had my first dose of chop yesterday and it went well. Last night I did have a hard time sleeping. Even with the Zofran I was still very nauseated and I had alot of joint pain. My reaction was the shakes and my throat felt tight and I started wheezing. Extremely scary! I also experienced severe all over bone pain but now that you mention it, my left leg was the most painful! Prayers and blessings to you my friend! Hang in there.
Amy

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Addendum: I am so glad we r through the first dose of rituxin. I hope no reaction happen my next round and that will be the R CHOP protocol all together at he same time. And I pray for no reactions for you as well from here on out.

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Well I just think you're a very brave person, and really hope you get through this. I know how hard it can be I've been struggling myself with heart cancer (yes there is such thing) since April 2010 (maybe even before, but my diagnosis was on April) and it scares the hell out of me every time.
I sincerely hope you all get better, and get back to your life, as I'm sure there's lots of people who love you and want you back.
You have all my support, and I'll pray for you.

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FatmaEL,
U r very brave too. Heart would scare me. I've never seen that before..has to be pretty rare yes? My prayers are being said for you as well. Hang in there and god bless!

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Hi everyone

I have just joined this support group and I am from Austalia. I have been diagnosed with Follicular Non-Hodgins disease and I have a fairly large tumour in my abdomen which i know will be killed off by my treatment. I am on R-Chop also and unlike Amy and Mike, I have been fortunate that my reaction has been very minor - a little nausea and dry mouth.

Like you all, I am strong in mind and spirit but every now and again i am overwhelmed by the situation. I virtually had no symptoms and it was a freak case of vertigo that had me a the doctors where I just happen to mention that my stomach was tender that they actually found the tumour.

I pray for all of you and hope that your treaments become easier.

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Hi Dina:
Just saw you post as I was browsing. I want you to know that they have a new drugs out now for Follicular NH. I will try and find the website and send it to you.

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Wow, that is interesting. My Vertigo started the same time that I noticed my neck nodes swollen. I have had it occur off and on for the last two years, sometimes pretty bad. I had a brain scan and even hearing test. All neg. I def think it is in some way related to the Lymphoma which when I have flare ups, (swollen nodes or sore neck) maybe the fluid movement is slowed down because of it in the inner ear area. Anyway, it is noted in my DX. I have always wondered if anyone else had a Vertigo connection to their Lymphoma. Thanks for sharing. The best of luck to all of you in your treatments. I am on Watch & Wait and have my next series of scans and bone biopsy in Feb.

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I have had "dizziness for the past year that noone could explain but my lymphoma is in my bone so I'm not sure it's related. My dizziness has been mild though. It is an interesting thought though.

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Dina,
So thankful your lymphoma was found! Also very glad to hear you've had relatively mild symptoms. Just goes to show we all react differently. My body does not like what is going on at all! It is majorly regressing like a stubborn teenager! Haha anyhow. Take care stay positive and keep fighting.
Amy

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Hi Amy

Thank you for your comments. It is really nice (as strange as this may sound) that there are people who know how you feel and that you can share thoughts and experiences with.

I am staying positive and hopefully my half way scan will show that this 'Mr ******** is shrinking and responding they way it should be. My doctor says that he can't feel the tumour anymore so hopefully the scan will show minimal tumour.

My thoughts and prays are with everyone and i hope everyone can get through their treatment feeling reasonable ok - particularly those that have families to care for.

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Dina,
Thank You. You r so sweet. I agree it's really nice to talk with others who know. Unfortunately I feel like dog poop. I have since Wednesday. I hope I'm about on the mend cause I can't stand this. I know I have to do what I have to do but it just sucks. Please tell me details how u all felt while receiving r chop or if u r receiving it now. Did U get sick even while taking anti nausea meds. Did u get super duper weak? And headache. I've had a non stop headache since tuesday. It won't go away no matter what! Hurts so bad. I have been in bed since Wednesday pretty much all day. I'm sick of just laying here. I want to get up and eat. I want to do household choirs. And to think......this is just the beginning.gotta go getting sick
Hugs
Amy

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Hi Dina & Amy,

I also have been dx with DLBCL stage 3A and begin my first round of R-CHOP next Thursday, 6th Jan. I am feeling very nervous about what to expect. I had been feeling quite unwell for some time with flu like symptoms, but nothing very definite. I than had a tooth abcess and put the swollen glands in my right neck down to the infection in my front tooth. After that was all healed the glands still did not go down and my dentist could find no other dental cause for it and told me to go see my GP.

I did that and she did a complete blood work and ordered a neck ultrasound. The blood work all came back normal and scan just stated that a core biopsy was recommended. My GP wasn't convinced this was the way to go so booked me in to see an ENT Specialist.

The specialist decided to do an ultrasound guided fine needle biopsy with results confirming I had NHL. Two days later after dx I had the largest node in my neck removed so they could determine what sub type of NHL it was. A CT scan showed that lymph nodes were involved above and below my diaphram and I was due to have a bone marrow biopsy on 30th Dec. but it was cancelled at the last minute and my Oncologist said that I didn't need it anymore because the histology reports were conclusive enough and that it wouldn't have effected the treatment plan as it is assumed that my bone marrow is also involved.

Anyway I thought I would try this site as another site "talkaboutblood' hasn't yet given me any feedback. I feel it is important to be able to talk to others who are going through the same thing even though family and friends are loving and supportive, they can't truely understand what's happening.

Dina I live in Adelaide, where are you? Also what have done about covering you head when hair falls out?

Kate