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Low Lymphocytes 5 years post - Damage from treatment ...Is this serious ? #197713
12-21-2018 01:19 PM
12-21-2018 01:19 PM
Joined: Nov 2013
Posts: 9
M
marcopolo Offline OP
"OCF Canuck"
marcopolo  Offline OP
"OCF Canuck"
Member
M

Joined: Nov 2013
Posts: 9
Hello All,

I am almost 5 years post treatment.
I am extremely grateful I have been given an all clear for 5 years now !

My blood work however, has consistently come back low lymphocytes .6 (normal range 1-2.9) and High Billirubin.
This has been the case since treatment in 2014.
Prior to treatment my lymphocytes were consistently 1.70 range.
Infections , colds, ...take a real long time to heal.
I had a number of nasal infections and impetigo actually in my first year after treatment.
My oncologist disputes this has occurred as a result of treatment or that it is a concern.
He referred me to a Gastroenterologist for Gilberts disease that came back negative.( i keep complaining of poor digestion / bloating)
My bilirubin is still HIGH and was that way just prior to my cancer diagnosis in 2014.


I am feeling anger towards my oncologist for dismissing this and creating a lot of worry / anxiety-
So great at curing me of the cancer but I am really baffled ...it seems they do not want to deal with this ....or are simply clueless which doesnt make sense ..it is supposed to be one of the best hospitals in North America for Head neck cancers.
I can read online LOW LYMPHOCYTES NEED FOLLOW UP !!!

My gastroenterologist agrees with me. He feels I was dismissed and immediately referred me to a hematologist.
My GP agrees my Lymphocytes need to be followed up.
He doesn't believe it is a cancer...lymphocytes would be HIGH not Low... but he doesn't know.

My questions ....

Has anyone experienced permanent damaged blood cells due to chemotherapy and radiation ?
Long term ... Is there anything that can be done to improve this ?

Has anyone requested an new oncologist ?


Note :
My thyroid failed in 2017...I have been on levothyroxine for about 1 year now...1mg and this has finally stabilized my TSH, t3 , t4 and ferritin, b12, folate numbers. I just started b12 vitamins.





Any help here is greatly appreciated

Thank you all,

Mark










Last edited by marcopolo; 12-21-2018 01:25 PM.

base of tongue scc 11/02/13
stage 4 hpv16
necrotic lymph-left
CYSPLATIN 2x- unable to tolerate 3rd
RAD35=imrt completed feb 28-2014
70gy
peg -removed -april 2014
bot cancer -not visually evident
lymph node still slightly over sized 1.3 cm no surgery planned
wait for future scan results march2015
terrible digestion for months
inguinal hernia a result?
no appetite most days-
update.. [Re: marcopolo] #197931
03-04-2019 02:01 PM
03-04-2019 02:01 PM
Joined: Nov 2013
Posts: 9
M
marcopolo Offline OP
"OCF Canuck"
marcopolo  Offline OP
"OCF Canuck"
Member
M

Joined: Nov 2013
Posts: 9
I have had 147 views of this post and no responses...perhaps no one has this side effect..

I am happy to report I got to the bottom of this..
This is my new normal. .6 lymphocyte count is not normal. i do have to keep close watch on this. particularly when ill ...It took a 2nd oncologist to acknowledge this is probably the side -effects of chemotherapy / radiation.
google cisplatin( my chemo drug) and lymphopenia..there is a co-relation.

I have had many nasal/ ora infections in 5 years and now face a previous root canal / bridge that has become infected.
Hopefully a retreatment of the root canal will work ...an extraction I will avoid at all costs given the risk.

I am hoping this information someone finds helpful one day.

Last edited by marcopolo; 03-04-2019 02:03 PM.

base of tongue scc 11/02/13
stage 4 hpv16
necrotic lymph-left
CYSPLATIN 2x- unable to tolerate 3rd
RAD35=imrt completed feb 28-2014
70gy
peg -removed -april 2014
bot cancer -not visually evident
lymph node still slightly over sized 1.3 cm no surgery planned
wait for future scan results march2015
terrible digestion for months
inguinal hernia a result?
no appetite most days-
Re: update.. [Re: marcopolo] #197936
03-05-2019 09:24 AM
03-05-2019 09:24 AM
Joined: Jun 2013
Posts: 286
alabama
K
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 286
alabama
I am so sorry. I read, but had not experienced this (and I get some pretty wonky bloodwork at times).

If you're going for the root canal work, and with your healing compromised ... have they talked to you about hyperbaric oxygen treatments beforehand? They had me do that before removing my teeth (due to the radiation decay). It takes time, but it is supposed to help push those capillaries to grow and carry more oxygen, which is worth the effort.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: update.. [Re: KristenS] #197937
03-05-2019 11:23 AM
03-05-2019 11:23 AM
Joined: Jun 2007
Posts: 10,225
PA
C
ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,225
PA
Im very sorry Marco for not replying!!! None of us here are doctors or have medical training/backgrounds so unfortunately most will not have the specific, in depth knowledge you needed. Ive had bad bloodwork for at least the first 5 years after my first OC. It just became the norm for me. You are not alone with the thyroid not functioning properly after OC treatments. Seems like its inevitable for almost all who have been thru OC w/ rads and chemo... not sure if its only those who had cisplatin or not? Im currently on 75 mcg of levothorxine but sometimes my doc puts it up to 88 mcg after seeing my bloodwork numbers. Ive been doing this for so long (12 years) I havent paid much attention to my bloodwork numbers, guess I really need to watch every little thing like I used to!

Thank you very much for coming back and updating your post!!! Others definitely will benefit from your knowledge. Im hoping this will get sorted out for you soon. Best wishes for many more cancer-free years ahead.


@Kristen.....Pilocarpine has also been known to help patients with low platelets. Personally I couldnt stand the side effects of it making me sweat like crazy. I was given pilocarpine in addition to doing the HBO.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: update.. [Re: ChristineB] #197941
03-05-2019 02:34 PM
03-05-2019 02:34 PM
Joined: Jun 2013
Posts: 286
alabama
K
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)
K

Joined: Jun 2013
Posts: 286
alabama
I've got the ruined thyroid too. I had carboplatin, but that's very close to cisplatin, isn't it? It does seem we all end up with that, but I thought it was the radiation. My rads doctor seemed to think so, but only in the way that he was quick to make sure I didn't blame HIM if my thyroid was fried (which had not occurred to me till he acted that way, sigh) ... his words to me were, "Well, it wouldn't have failed if it wasn't weak in the first place." Which I took to mean, "Yep, it was the radiation, but it's still your fault." Gah.

I didn't have to take anything else along with the HBO, though perhaps some movies for the TV would have been a good idea. Fortunately the room nurses had similar tastes in TV (we watched a lot of Food Network and HGTV, I think) which wasn't too bad (though watching all that good food is just torture for us oral cancer patients!). But each tube had its own screen, and we could choose our own channels, and if the nurses didn't want to listen in, they just muted the outside TV. All good. We swapped a lot of recipes. smile


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: update.. [Re: marcopolo] #197942
03-05-2019 03:17 PM
03-05-2019 03:17 PM
Joined: Oct 2012
Posts: 1,055
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,055
Toronto, Canada
Like Kristen and Christine, I read your post but wasn’t sure if I could help. Anyway, my husband deed up with hypothyroidism post treatment was prescribed thyroid hormone. He needed a root canal he second year after treatment. He was just in a general dentist’s office and no des required. Hope this helps.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Low Lymphocytes 5 years post - Damage from treatment ...Is this serious ? [Re: marcopolo] #197945
03-05-2019 06:38 PM
03-05-2019 06:38 PM
Joined: Jul 2012
Posts: 3,135
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,135
NYC
Marcopolo,

I too have hypothyroidism after treatment, and take 150 Mcg of levothyroxine, which had increased over the years. My bloodwork is consistantly out of whack for almost 10 years, and the report looks like a Christmas tree, usually with 20 items out of range. I try to correct what I can, sometimes, but fewer theses days I receive medications or am hospitalized, have transfusions. Just a few weeks ago, I was at the ER for pneumonia after my 5th time there in several months after doing pretty good. I think when I stop seeing my doctors, several at that, I have problems, so now I have to catch up with all of them after a three month lapse (I was in a nursing home) . Sometimes I see some weekly or monthly, and others every three months usually.

I hope this helps.


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent







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