Introduction and diagnosis

liamcafs · New User Joined: 23 Mar 2008 Posts: 7

Hi my name is Liam, Im a 26yo British male living in Oklahoma.

On 18 of Feb i went to my doctors with terrific back pain and nausea. I was sent for a CT scan immediately because they thought my appendix was about to give way. It turned out my appendix was fine and I had a large mass in my lower right abdomen along with severe thickening in a 4" section of my small intestine, also had some legions on my liver.

My doctor didn't want to do a biopsy so I was sent for a PET scan. Things were all starting to look a bit like Lymphoma. It was decided that I would undergo surgery to remove all the nasties.

So on the 26 of Feb I had surgery to remove 3' of small intestine, the abdominal lump (which turned out to be a lymph node connected to the thickened intestine), 2 wedges of liver, my appedix and gall bladder ( while they were in there)

I am slowly getting back to normal after the op, and tomorrow I have a Bone Marrow Biopsy. On Wednesday I am having my port installed.

My Chemo starts on 4th April, at least 6 treatments on a 3 week cycle.

EDIT
Sorry my diagnosis is diffuse large b-cell NHL

QUESTIONS

I am not sure exactly what regime im on, I can't remember what the doc said. I know it at least 4 drugs including the one which is cardiotoxic, Doxorubicin??. Also he said i would be taking oral drugs for 5 days following my chemo, anyone know what this might be? Is this likely to be CHOP-R?

Any help/advice/similar experiences greatfully accepted

Many Thanks

Liam Mc

brainman · Posted: Mon Mar 24, 2008 4:37 am Post subject: Re: Introduction and diagnosis

liamcafs, I am so sorry about your cancer. CHOP-R is in fact used for Lymphomas. The letters stand for"

C = Cyclophosphamide (Cytoxan)

H = Hydroxydoxorubicin (Adriamycin or **doxorubicin**)

O = Oncovin (Vincristine)

P = Prednisone

That is the standard. To that they add an immunotherapy drug called
Rituxan and you get CHOP+R.

You probably already knew all of that, but just in case...

The only component that I have had any personal experience with is the Vincristine. I took it for a couple of cycles before they discontinued it because is was causing neuropathy to my toes.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

liamcafs · New User Joined: 23 Mar 2008 Posts: 7

had my bone marrow biopsy this morning, it was a little uncomfortable but it was no where near as bad as i had expected and 6 hours later doesn't hurt at all.

I think the anticipation is the worst thing.

liamcafs · New User Joined: 23 Mar 2008 Posts: 7

had my port put in yesterday under general anaesthetic, felt super sick for about an hour after waking, they gave me zofran for that. then i felt fantastic but a bit wobly on my feet. Slept from 6.30 last night untill 7 this morning.

I feel like crap this morning my port site hurts way more than i expected it seems as though the port is directly under the incision which is different to the pictures i have seen

I felt sick again this morning took zofran for that.

I start chemo on 4th April-to confirm i will be on R-CHOP

brainman · Posted: Thu Mar 27, 2008 3:27 pm Post subject: Re: Introduction and diagnosis

Good to hear that things are moving forward. The pain will go away and you will be glad to have the port. My father did not have a port and had to have an IV started for each of his treatments.

Good luck with your treatments.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

apa1026 · New User Joined: 28 Apr 2008 Posts: 3

I was also diagnosed to have Diffuse Large B Cell Lymphoma after waking up on Feb. 29 with excruciating abdominal pain. Diagnostic tests done to me on that day including blood tests, ultrasound and xray were all negative of any problem. Several pain reliever shots were given to me that never at all helped stopped the pain. On March 2, i had an emergency exploratory laparoscopy and my surgeon removed my appendix which has started to get swollen caused by a growing mesenteric cyst beside it. Three pathologist examined the cyst and they all concluded Lymphoma. I consulted three Oncolgists. the first one advice me not to worry anymore since my surgeon has already assured me and all my other doctors that he checked my whole abdomen and made sure that he didnt left any residue of the monster. The second oncolgist agreed to the 1st oncologist but advice me that if i want peace of mind i may have a chest CT-Scan to make sure that my chest is free of any problem, and a bone marrow biopsy to see if it has been attacked by the monster. I had my CT scan of neck down to my liver area 3 weeks ago and the result is good. no lymph node is seen, not even a tiny one. i am supposed to have my bone marrow biopsy last week but the 3rd oncologist we consulted advice me to undergo immediately 6 cycle of CHOP chemotherapy because accdg to her the kind of cancer i have is very aggresive. She also told me that the best time to have my bone marrow biopsied will be after the treatment.

I am 34 years old, happily married and a proud mother of a two year old boy. i never had any symptoms before except the excruciating pain i had on feb 29. i am a vegan eversince, i dont drink nor smoke. i believe i am living a very healthy life.

My question is should I really undergo chemotherapy when all the symptoms of lymphoma is not present? How can the cancer medicine treat the cancer when it is no longer in my body? Supposed, there is a residue of the cyst in my bloodstream now circulating around my system,is it not suppose to cause any blockage first to any of my organs or to the whole system which I would definitely feel before it is able to kill me?

I believe I am very much ready for the treatment. in fact my schedule for the 1st chemo is this Friday, May 2. I have my wig ready and a bright colored wardrobes already packed. My outlook towards my situation now is very good.i could even joked about my cancer but im starting to be confused as to whether or not to go with the treatment. Why would I suffer all the complications and side effects of chemo if my body doesnt even need it now? Pls. help

liamcafs · New User Joined: 23 Mar 2008 Posts: 7

I am not a doctor and my advice should not be taken over any medical professional, but I have advanced stage 4 NHL and I didn't have a single classic symptom. The only time I knew I was sick was when I had the excruciating pain in my back. So I would have the chop even though you don't have any symptoms. I did have a bone marrow biopsy, and thankfully it did come back clear.

As an update, I have had 2 treatments of chop-r so far. The first made me feel really crappy and nauseous. I have my treatments on fridays, saturday and sunday were not too bad. I had emend on those days. By far the worst days were the monday and tuesday felt sick to my stomach and not much better on the wednesday. By thursaday night I was back to feeling somthing like normal. I was very and continued to be fatigued though. I should add that I had IV iron a week after my first treatment for my anemia which really lifted my spirits and made me feel better. My HG is up to 12 now from a low of 6.9.

The second treatment was a lot better I was a lot more proactive with the compazine and Zofran and now I am a week out from it and I have not had any sickness at all. I think think I may have overdone it a bit on the Zofran and compazine though as I felt dizzy light headed and blurred vision along with the most tired I have ever felt in my life. This was very unsettling.

skyblue4848 · New User Joined: 06 Apr 2008 Posts: 7

[quote="brainman"]liamcafs, I am so sorry about your cancer. CHOP-R is in fact used for Lymphomas. The letters stand for"
:arrow: C = Cyclophosphamide (Cytoxan)
:arrow: H = Hydroxydoxorubicin (Adriamycin or **doxorubicin**)
:arrow: O = Oncovin (Vincristine)
:arrow: P = Prednisone

That is the standard. To that they add an immunotherapy drug called
Rituxan and you get CHOP+R.

You probably already knew all of that, but just in case...

The only component that I have had any personal experience with is the Vincristine. I took it for a couple of cycles before they discontinued it because is was causing neuropathy to my toes.

You are in my thoughts and prayers.[/quote]

Hi Brainman,

You mentioned above that the vincristine was causing neuropathy to your toes. In the past 2 weeks, I have been feeling numbness in the last 2 fingers of my left hand (possibly ulna nerve entrapment) and I suspect it's being caused by vincristine. I shared my concerns with the oncologist but he brushed it aside as a normal reversible side effect. When you discontinued the use of vincristine, was the call made by your oncologist or based on an independent evaluation by a 3rd party e.g. orthopedic? I'm concerned that my continued use of vincristine may cause irreparable damage due to an error of judgment on my oncologist's part. Any thoughts/feedback will be much appreciated. Thanks
_________________
Age: 38
Age at time of diagnosis: 38
Clinical Stage: Diffuse Large B-cell NHL stage 2B
Growth sites: left neck lymph node and medastinal region
Finished 6 sessions of R-CHOP
Completed 23 sessions of Radiotherapy

brainman · Posted: Tue May 20, 2008 1:47 pm Post subject: Re: Introduction and diagnosis

After I reported my numbness to my oncologist, he referred the issue to my neurologist. The neurologist did a nerve conductivity test which did show mild neuropathy to my feet. The two then consulted each other. After that, my oncologist discontinued the Vincristine. All of this took a couple of weeks but before I was scheduled to have anymore Vincristine.

If I were you, I would do two things: 1. Keep a watchful eye on your numbness and 2. Continue to tell your oncologist about this problem and maybe suggest a nerve conductivity test. If you have a neurologist, mention this to him/her as well.

Regards
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

skyblue4848 · New User Joined: 06 Apr 2008 Posts: 7

Thanks for the tips Brainman.

Will keep you posted on my progress.
_________________
Age: 38
Age at time of diagnosis: 38
Clinical Stage: Diffuse Large B-cell NHL stage 2B
Growth sites: left neck lymph node and medastinal region
Finished 6 sessions of R-CHOP
Completed 23 sessions of Radiotherapy

ebmonkey2 · Regular Joined: 16 May 2008 Posts: 13

Liam, I am so sorry to hear about your cancer. Ironically, you started chemo on the same day as my father who is also having 6 (to 9) 3 week cycles of his chemotherapy. Just remember to stay strong, and you will make it through this.

Good luck,
keep us updated,
_________________
Dad Has Burkitt's Lymphoma
Age 52
Diagnosed March 28th, 2008

ChemoMan · Posted: Thu Jun 05, 2008 2:42 pm Post subject: Re: Introduction and diagnosis

[quote="apa1026"]I was also diagnosed to have Diffuse Large B Cell Lymphoma after waking up on Feb. 29 with excruciating abdominal pain. Diagnostic tests done to me on that day including blood tests, ultrasound and xray were all negative of any problem. Several pain reliever shots were given to me that never at all helped stopped the pain. On March 2, i had an emergency exploratory laparoscopy and my surgeon removed my appendix which has started to get swollen caused by a growing mesenteric cyst beside it. Three pathologist examined the cyst and they all concluded Lymphoma. I consulted three Oncolgists. the first one advice me not to worry anymore since my surgeon has already assured me and all my other doctors that he checked my whole abdomen and made sure that he didnt left any residue of the monster. The second oncolgist agreed to the 1st oncologist but advice me that if i want peace of mind i may have a chest CT-Scan to make sure that my chest is free of any problem, and a bone marrow biopsy to see if it has been attacked by the monster. I had my CT scan of neck down to my liver area 3 weeks ago and the result is good. no lymph node is seen, not even a tiny one. i am supposed to have my bone marrow biopsy last week but the 3rd oncologist we consulted advice me to undergo immediately 6 cycle of CHOP chemotherapy because accdg to her the kind of cancer i have is very aggresive. She also told me that the best time to have my bone marrow biopsied will be after the treatment.

I am 34 years old, happily married and a proud mother of a two year old boy. i never had any symptoms before except the excruciating pain i had on feb 29. i am a vegan eversince, i dont drink nor smoke. i believe i am living a very healthy life.

My question is should I really undergo chemotherapy when all the symptoms of lymphoma is not present? How can the cancer medicine treat the cancer when it is no longer in my body? Supposed, there is a residue of the cyst in my bloodstream now circulating around my system,is it not suppose to cause any blockage first to any of my organs or to the whole system which I would definitely feel before it is able to kill me?

I believe I am very much ready for the treatment. in fact my schedule for the 1st chemo is this Friday, May 2. I have my wig ready and a bright colored wardrobes already packed. My outlook towards my situation now is very good.i could even joked about my cancer but im starting to be confused as to whether or not to go with the treatment. Why would I suffer all the complications and side effects of chemo if my body doesnt even need it now? Pls. help[/quote]

Hi there
Lymphoma is treated by chemotherapy not surgery. Its is cancer of the lymphatic system not of individual glands.
A very difficult one as you have 2 onc's saying its OK and one saying No its not. I would see a haematologist for this one to get another opinion.
Left unteated NHL kills in 12 to 24 months, I would be getting another opinion. One more thing CT scans are of limited benefit, PET scans are required for certainty. A PET scan will show normal sized glands that are undergoing cancerous changes where a CT scan won't

Cheers and good luck
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

ChemoMan · Posted: Thu Jun 05, 2008 3:03 pm Post subject: Re: Introduction and diagnosis

[quote="liamcafs"]I am not a doctor and my advice should not be taken over any medical professional, but I have advanced stage 4 NHL and I didn't have a single classic symptom. The only time I knew I was sick was when I had the excruciating pain in my back. So I would have the chop even though you don't have any symptoms. I did have a bone marrow biopsy, and thankfully it did come back clear.

As an update, I have had 2 treatments of chop-r so far. The first made me feel really crappy and nauseous. I have my treatments on fridays, saturday and sunday were not too bad. I had emend on those days. By far the worst days were the monday and tuesday felt sick to my stomach and not much better on the wednesday. By thursaday night I was back to feeling somthing like normal. I was very and continued to be fatigued though. I should add that I had IV iron a week after my first treatment for my anemia which really lifted my spirits and made me feel better. My HG is up to 12 now from a low of 6.9.

The second treatment was a lot better I was a lot more proactive with the compazine and Zofran and now I am a week out from it and I have not had any sickness at all. I think think I may have overdone it a bit on the Zofran and compazine though as I felt dizzy light headed and blurred vision along with the most tired I have ever felt in my life. This was very unsettling.[/quote]

Hang in there Bro'. Its good gear they are giving you and it really works ! little sips of dry ginger ale worked for me as did hot cups of tea when I started feeling sick. I also noticed that when I had an empty stomach the nausea got much worse, so I forced myself to eat even if I didn't feel like it. it helped Smile

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
http://cancerforums.net/viewtopic.php?t=9620

skyblue4848 · New User Joined: 06 Apr 2008 Posts: 7

[quote="brainman"]After I reported my numbness to my oncologist, he referred the issue to my neurologist. The neurologist did a nerve conductivity test which did show mild neuropathy to my feet. The two then consulted each other. After that, my oncologist discontinued the Vincristine. All of this took a couple of weeks but before I was scheduled to have anymore Vincristine.

If I were you, I would do two things: 1. Keep a watchful eye on your numbness and 2. Continue to tell your oncologist about this problem and maybe suggest a nerve conductivity test. If you have a neurologist, mention this to him/her as well.

Regards[/quote]

Hi Brainman,

Just wanted to update you that after consultation with my oncologist and neurologist, I was switched to vinblastine on my 6th session which has comparatively lower neuropathic tendencies. Thanks again for the tips.
Best regards
_________________
Age: 38
Age at time of diagnosis: 38
Clinical Stage: Diffuse Large B-cell NHL stage 2B
Growth sites: left neck lymph node and medastinal region
Finished 6 sessions of R-CHOP
Completed 23 sessions of Radiotherapy

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