littleflower70
06-21-2008, 01:07 PM
Hi
New to this site but hoping someone can offer some insight. 5 months ago I had swollen axillary nodes (no pain). Since then have off and on rib/back pain (more often than not). Have a lot of sweating that I just don't remember past a year ago, also my feet and hands itch a lot. Now for the 4th straight month in a row my wbc are elevated and most recently, high platelets. I also developed anemia a few months back all of a sudden. Anyone have/had similar experience?
My doc has now decided (after he kept brushing the rib pain off as breast size) that the bloodwork is not right and has not been for months, I'm going for a hematology consult.
Help, worried and have no support from my husband as he thinks this is in my head!
Littleflower70:confused:
New to this site but hoping someone can offer some insight. 5 months ago I had swollen axillary nodes (no pain). Since then have off and on rib/back pain (more often than not). Have a lot of sweating that I just don't remember past a year ago, also my feet and hands itch a lot. Now for the 4th straight month in a row my wbc are elevated and most recently, high platelets. I also developed anemia a few months back all of a sudden. Anyone have/had similar experience?
My doc has now decided (after he kept brushing the rib pain off as breast size) that the bloodwork is not right and has not been for months, I'm going for a hematology consult.
Help, worried and have no support from my husband as he thinks this is in my head!
Littleflower70:confused:
Sponsor
pinkmada
06-21-2008, 01:24 PM
hey,
welcome to the board.
im sorry you've been having such problems. and im sorry no-one has believed you. i think there are a few of us with similar stories on here. do you know how long you have to wait til you see the haematologist? have you ever had an xray or CT scan or anything?
amanda
x
welcome to the board.
im sorry you've been having such problems. and im sorry no-one has believed you. i think there are a few of us with similar stories on here. do you know how long you have to wait til you see the haematologist? have you ever had an xray or CT scan or anything?
amanda
x
littleflower70
06-21-2008, 01:48 PM
hey,
welcome to the board.
im sorry you've been having such problems. and im sorry no-one has believed you. i think there are a few of us with similar stories on here. do you know how long you have to wait til you see the haematologist? have you ever had an xray or CT scan or anything?
amanda
x
Hi
How did you get your DX? Are you ok now???
welcome to the board.
im sorry you've been having such problems. and im sorry no-one has believed you. i think there are a few of us with similar stories on here. do you know how long you have to wait til you see the haematologist? have you ever had an xray or CT scan or anything?
amanda
x
Hi
How did you get your DX? Are you ok now???
pinkmada
06-22-2008, 05:44 PM
hey,
i am almost a year in remission. lymphoma is one of the most curable and treatable of all cancers. i had severe lower back pain for about 9months before i was finally diagnosed. no-one would believe me that i was in pain because they couldnt find the cause of it and because the doctors couldnt give me a diagnosis most of my family and friends didnt believe me either. i never had any swollen lymph nodes until about 2 weeks before i was finally diagnosed.
do you know how long you have to wait until you will speak with a haematologist?
x
i am almost a year in remission. lymphoma is one of the most curable and treatable of all cancers. i had severe lower back pain for about 9months before i was finally diagnosed. no-one would believe me that i was in pain because they couldnt find the cause of it and because the doctors couldnt give me a diagnosis most of my family and friends didnt believe me either. i never had any swollen lymph nodes until about 2 weeks before i was finally diagnosed.
do you know how long you have to wait until you will speak with a haematologist?
x
littleflower70
06-22-2008, 06:53 PM
Hi Amanda
I have an appointment with a hematologist this friday, june 27th. I'm not sure what to ask. I was in horrible pain again last night that had me sweating. Seems if I'm active it makes the pain worse. My Dr. has been blaming it on breast size for months. (not a big girl at all but up top I'm pretty well blessed). I think that was the easiest DX and my husband still thinks that I'm being sent to alleviate my mind. Meanwhile my bloodwork shows that I'm fighting something... Ugh. The pain has been for about 5 months now. How was your bloodwork?
Thanks for listening!! Are you ok now? Here if you need to talk! XX
I have an appointment with a hematologist this friday, june 27th. I'm not sure what to ask. I was in horrible pain again last night that had me sweating. Seems if I'm active it makes the pain worse. My Dr. has been blaming it on breast size for months. (not a big girl at all but up top I'm pretty well blessed). I think that was the easiest DX and my husband still thinks that I'm being sent to alleviate my mind. Meanwhile my bloodwork shows that I'm fighting something... Ugh. The pain has been for about 5 months now. How was your bloodwork?
Thanks for listening!! Are you ok now? Here if you need to talk! XX
pinkmada
06-23-2008, 06:39 PM
hey,
my original doctor told me apart from my pain (which she thought i was making up) everything else was normal. however i changed my doctor when she told me that the night sweats, fevers and a particularly scary hallucination was the antibiotics 'finally working'. so i changed my doctor and he said that there was definatly something wrong as my bloods were a mess and my white blood count had been alleviated since my pain started. i recently requested my medical notes and found out that my WBC, c-reactive protein, gamma GT levels, and lots of other things were all really high and abnormal. i had lots of scans (before i changed doctor) and was told everything was fine but when i changed my doctor he pushed the hospital to repeat the scans and then i was finally dx with hodgkins.
i do understand that lymphoma is really difficult to diagnose. theres lots of symptoms that could point to a number of things and i know i didnt have any normal symptoms for a long time. but it was the way i was treated. one doctor told me that pain can be psychological. im okay now, just really coming to terms with it all.
i dont know what to ask the doctor. the first time i net my haematologist was the day after i was dx. and she told me everything about the treatment (i had 6 cycles of chemo) and all i really asked her was how it would affect my studies. i guess i was still in shock when i saw her. i never thought for a second that i had cancer so i didnt have many questions. if they do suspect its lymphoma, they will probably do a CT scan and then do a biopsy of one of the nodes. i think a biopsy is the only way to confirm the diagnosis. i cant imagine how you must be feeling just now. i was never told that it 'could be' cancer so that dx was a total shock. so i cant imagine having to think about it before.
thanks, i swear i couldnt have got through it without the guys on here. i mean no-one can understand what you are going through unless they have been through it themselves. can i give you a piece of advice. please don't use a search engine to look it up. there are some really nasty sites out there and you will make yourself very upset. i made that mistake and its horrible. i pray that your appointment goes okay and its just an infection. please let me know how it goes.
amanda
xxx
my original doctor told me apart from my pain (which she thought i was making up) everything else was normal. however i changed my doctor when she told me that the night sweats, fevers and a particularly scary hallucination was the antibiotics 'finally working'. so i changed my doctor and he said that there was definatly something wrong as my bloods were a mess and my white blood count had been alleviated since my pain started. i recently requested my medical notes and found out that my WBC, c-reactive protein, gamma GT levels, and lots of other things were all really high and abnormal. i had lots of scans (before i changed doctor) and was told everything was fine but when i changed my doctor he pushed the hospital to repeat the scans and then i was finally dx with hodgkins.
i do understand that lymphoma is really difficult to diagnose. theres lots of symptoms that could point to a number of things and i know i didnt have any normal symptoms for a long time. but it was the way i was treated. one doctor told me that pain can be psychological. im okay now, just really coming to terms with it all.
i dont know what to ask the doctor. the first time i net my haematologist was the day after i was dx. and she told me everything about the treatment (i had 6 cycles of chemo) and all i really asked her was how it would affect my studies. i guess i was still in shock when i saw her. i never thought for a second that i had cancer so i didnt have many questions. if they do suspect its lymphoma, they will probably do a CT scan and then do a biopsy of one of the nodes. i think a biopsy is the only way to confirm the diagnosis. i cant imagine how you must be feeling just now. i was never told that it 'could be' cancer so that dx was a total shock. so i cant imagine having to think about it before.
thanks, i swear i couldnt have got through it without the guys on here. i mean no-one can understand what you are going through unless they have been through it themselves. can i give you a piece of advice. please don't use a search engine to look it up. there are some really nasty sites out there and you will make yourself very upset. i made that mistake and its horrible. i pray that your appointment goes okay and its just an infection. please let me know how it goes.
amanda
xxx
littleflower70
06-25-2008, 11:51 AM
Hi Amanda
Ugh. I can't believe these dr's! My last visit to ER they told me my labs looked "ok" and when they released me and gave me copies, there were so many that were elevated and high I thought this is what is ok!
I'm scared about this because my gamma gt is high too, along with my wbc, platelets and seg absolute (think that's another wbc). I feel awful and I'm always tired.
Did you have to request your medical records from the hospital and did it take a while? What did the Dr. say when he read the hospital notes! Is this ok that WOMEN seem to be treated like hypochondriacs or mental cases!
So frustrated!
How are you now feeling?
Dawn
Ugh. I can't believe these dr's! My last visit to ER they told me my labs looked "ok" and when they released me and gave me copies, there were so many that were elevated and high I thought this is what is ok!
I'm scared about this because my gamma gt is high too, along with my wbc, platelets and seg absolute (think that's another wbc). I feel awful and I'm always tired.
Did you have to request your medical records from the hospital and did it take a while? What did the Dr. say when he read the hospital notes! Is this ok that WOMEN seem to be treated like hypochondriacs or mental cases!
So frustrated!
How are you now feeling?
Dawn
pinkmada
06-25-2008, 08:23 PM
im in the uk so we dont get copies of our notes when we are discharged. i waited til i was finished treatment and then requested all my notes. i plan on making a formal complaint but it is about my previous gp and the way she treated me. it took them months before they sent my notes and i was contacted from the main hospitals legal dept to 'check if i was okay'. i am still awaiting my scan images as my first set of scans were apparently clear even though in my notes it said they had 'watched' a mass grow in my chest for months. my new gp never told me what was in my notes. he told me that all my bloods from when i first started having pain were abnormal and my body was obviously fighting an infection.
when you got copies of your bloods did they let you know the normal ranges so you can compare? i got bloods done almost every week and they progressively got worse. the also had my wieght charted and i lost over 2 and a half stone in 6 months. and this didnt sem to worry anyone. i hardly ate, a mouthful of food and i felt like i had eaten a three course meal.
sometimes it doesnt feel real to me and i guess that would be more normal for someone who has just been diagnosed. i feel like im going backwards. i just got on with it last year. i didnt question anything, i didnt hesitate, i just did it. but now i have time to think about it and its like its all hitting me now. it just doesnt feel real.
when you got copies of your bloods did they let you know the normal ranges so you can compare? i got bloods done almost every week and they progressively got worse. the also had my wieght charted and i lost over 2 and a half stone in 6 months. and this didnt sem to worry anyone. i hardly ate, a mouthful of food and i felt like i had eaten a three course meal.
sometimes it doesnt feel real to me and i guess that would be more normal for someone who has just been diagnosed. i feel like im going backwards. i just got on with it last year. i didnt question anything, i didnt hesitate, i just did it. but now i have time to think about it and its like its all hitting me now. it just doesnt feel real.
littleflower70
06-25-2008, 08:34 PM
Hi
I feel so badly for you! Here the hospitals will give you copies of everything if you ask. Not sure about notes as I have never heard of them until your post. HOwever, on the labs, it will give you the comparisons so you can see what is elevated or abnormal. Mine have not been normal for months now. Pretty much as soon as I've been complaining of the rib/flank/back pain. Sometimes it hurts to lay down and I can't sleep very well.
I've also noticed strange liver enzymes elevated more recently the gamma. My hemtalogy appt was postponed from their office until july 1st now. I'm going out of my mind worrying and feel so lousy.
I just keep wondering what is wrong and hope that its some fluke.
Did you feel nauseaus or light headed by the time of your dx? Did you pain ever radiate to your stomach/flank area? Where were your lymph nodes swollen at the time of dx?
Dawn
I feel so badly for you! Here the hospitals will give you copies of everything if you ask. Not sure about notes as I have never heard of them until your post. HOwever, on the labs, it will give you the comparisons so you can see what is elevated or abnormal. Mine have not been normal for months now. Pretty much as soon as I've been complaining of the rib/flank/back pain. Sometimes it hurts to lay down and I can't sleep very well.
I've also noticed strange liver enzymes elevated more recently the gamma. My hemtalogy appt was postponed from their office until july 1st now. I'm going out of my mind worrying and feel so lousy.
I just keep wondering what is wrong and hope that its some fluke.
Did you feel nauseaus or light headed by the time of your dx? Did you pain ever radiate to your stomach/flank area? Where were your lymph nodes swollen at the time of dx?
Dawn
pinkmada
06-25-2008, 08:47 PM
i never had any nausea or light headedness. the pain was predominently at my lower back (which no-one would ever listen to me and they would feel my tummy and ask if it hurt and i'd say no but as soon as they touched my sides it hurt but they would never feel my back) it started creeping up my left side occasionally and then very very occasionally up my right side and when it hurt on my right side i couldnt breathe.
from what i have made out from my notes (no-one ever actually told me this) i had 5 masses, under my arm, between my lungs, my spleen, touching my aorta and 'liver involvement'. i was only ever told that there were masses above and below my diaphragm and because they told me about the 'cysts' they had seen on my spleen and then the lump that they took out of my arm i figured that was it. the lump under my arm appeared 2 weeks before my dx. i never had any lumps or bumps anywhere else.
i didnt sleep well either. i woke up everynight crying in pain. up until i changed to my new gp i wasnt given strong painkillers. i had to take them every 2 hours or i was in agony again so i woke up all the time during the night. i was told this was the strongest they had. when i changed my gp, he prescribed me with really strong painkillers that completely took away the pain and he also gave me slow release ones so i didnt have to get up during the night.
from what i have made out from my notes (no-one ever actually told me this) i had 5 masses, under my arm, between my lungs, my spleen, touching my aorta and 'liver involvement'. i was only ever told that there were masses above and below my diaphragm and because they told me about the 'cysts' they had seen on my spleen and then the lump that they took out of my arm i figured that was it. the lump under my arm appeared 2 weeks before my dx. i never had any lumps or bumps anywhere else.
i didnt sleep well either. i woke up everynight crying in pain. up until i changed to my new gp i wasnt given strong painkillers. i had to take them every 2 hours or i was in agony again so i woke up all the time during the night. i was told this was the strongest they had. when i changed my gp, he prescribed me with really strong painkillers that completely took away the pain and he also gave me slow release ones so i didnt have to get up during the night.
littleflower70
06-25-2008, 11:09 PM
Hi
Wow, you poor thing! I know about pain, I just had to ask my dr for a refill and he told the nurse to let me know that he was "uncomfortable" about prescribing this many again. I told the nurse, you let him know that as he has been dilly dallying around over whether this is breast size, ignoring my labs,I am in severe pain constantly and this is about my pain mgt now him being comfortable and now I'm seeing a hematologist about possibly lymphoma and he's uncomfortable. the nurse was just flabbergasted! How dare he and tell you what, if I do have something and he has messed around, someone is going to pay for it! This is my life and my body!
I have vicodin for pain but it really isn't working! So, what do I do, run to the hospital which my gp said to stop doing at some point cause I believe he thought I was making it up and the hospitals "don't know what to do either". UGH.
I guess the first odd thing I had was axillary nodes that were swollen, two months after, my blood work has been abnormal since. So he finally had to recommend a specialist! I am changing gp's but currently needed his help with some referrals and some disability papers I needed.
My job recently let me go because of my illness/absences.....
How are you now ? I hope you're feelling less stressed.
dawn
Wow, you poor thing! I know about pain, I just had to ask my dr for a refill and he told the nurse to let me know that he was "uncomfortable" about prescribing this many again. I told the nurse, you let him know that as he has been dilly dallying around over whether this is breast size, ignoring my labs,I am in severe pain constantly and this is about my pain mgt now him being comfortable and now I'm seeing a hematologist about possibly lymphoma and he's uncomfortable. the nurse was just flabbergasted! How dare he and tell you what, if I do have something and he has messed around, someone is going to pay for it! This is my life and my body!
I have vicodin for pain but it really isn't working! So, what do I do, run to the hospital which my gp said to stop doing at some point cause I believe he thought I was making it up and the hospitals "don't know what to do either". UGH.
I guess the first odd thing I had was axillary nodes that were swollen, two months after, my blood work has been abnormal since. So he finally had to recommend a specialist! I am changing gp's but currently needed his help with some referrals and some disability papers I needed.
My job recently let me go because of my illness/absences.....
How are you now ? I hope you're feelling less stressed.
dawn
pinkmada
06-26-2008, 05:44 AM
my manager where i was working when i was in pain made me apologise to the rest of the staff for not being able to bend down or carry heavy boxes. i had been off work for 7 weeks but i couldnt afford to pay my rent so i had to go back to work. when i was dx (and hes a friend of my mums) he never ever spoke to me again. i guess he was so ashamed. and it just added to the huge long line of people that thought i was making it up. i was off for 2 weeks after i was dx but then i went back to work after because as far as i was concerned i wasnt in pain anymore so i could just get on with it.
vicodin is paracetamol and codeine? thats what finally made my pain go away. they had me on tramadol for awile and said it was this amazing drug but i swear it hardly done anything to me. paracetamol worked better on its own.
i was deliberatly mis-dx with pelvic inflammatory disease and casually told i would never have children and given another course of antibiotics. it was my old gp's husband who made this dx and when i wound up being rushed to hospital cause i couldnt breathe again and was in so much pain and told them this dx i was seen by gynae and told that i definatly did not have PID and that my labs were all clean.
the whole thing is a mess. im still waiting on some of my notes and all of my scans but what ive got so far is so scary. it says from about 3 months before i was dx that 'the possibility of lymphoma has not yet been discussed with amanda'. it also said something about me working in a bar but 'apparently she doesnt drink'. like they just didnt believe a word i said at all.
i dont know how it works in the states but here you are protected if you are off sick from work and they cant fire you because of it. you can take them to a tribunual and the company has to back up you not your manager.
im going on holiday tomorrow so hopefully i'll feel a little less stressed. but i have an appointment to see my psych this afternoon and i know im going to be crying all day and i always feel really really low for a few days after ive seen her. i just dont understand why i am suddenly feeling so down. up until about new years i was so happy and then i just started feeling worse and worse til i went to see my consultant and she thought it best for me to see psych. i thought i had dealt with it all but apparently not.
anyways, i am praying for you that everything is okay xxx
vicodin is paracetamol and codeine? thats what finally made my pain go away. they had me on tramadol for awile and said it was this amazing drug but i swear it hardly done anything to me. paracetamol worked better on its own.
i was deliberatly mis-dx with pelvic inflammatory disease and casually told i would never have children and given another course of antibiotics. it was my old gp's husband who made this dx and when i wound up being rushed to hospital cause i couldnt breathe again and was in so much pain and told them this dx i was seen by gynae and told that i definatly did not have PID and that my labs were all clean.
the whole thing is a mess. im still waiting on some of my notes and all of my scans but what ive got so far is so scary. it says from about 3 months before i was dx that 'the possibility of lymphoma has not yet been discussed with amanda'. it also said something about me working in a bar but 'apparently she doesnt drink'. like they just didnt believe a word i said at all.
i dont know how it works in the states but here you are protected if you are off sick from work and they cant fire you because of it. you can take them to a tribunual and the company has to back up you not your manager.
im going on holiday tomorrow so hopefully i'll feel a little less stressed. but i have an appointment to see my psych this afternoon and i know im going to be crying all day and i always feel really really low for a few days after ive seen her. i just dont understand why i am suddenly feeling so down. up until about new years i was so happy and then i just started feeling worse and worse til i went to see my consultant and she thought it best for me to see psych. i thought i had dealt with it all but apparently not.
anyways, i am praying for you that everything is okay xxx