| | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | We have a friend, fellow HPV+ oral cancer patient, one year ahead of Vince. Has been doing great, oral cancer-wise, however his blood counts have historically not been great. WBC finally fell to 2.2 and low platelettes, earning him a bone marrow biopsy on Monday. The assumption is they are looking for a secondary cancer, leukemia. The family is extremely overwhelmed, not even sure what questions to ask. Any suggestions of things they need to be asking or researching?
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ana, hopefully someone who understands more of the medical things about bloodwork will come along to answer your post.
I can tell you that for the 8 months I was using a picc line with IV antibiotics, my white count was very low. It stayed around the 1.4 or 1.6 number which caused me to get the neupogen (sp) shots occasionally to boost the numbers back up. My doc would tell me not to worry so much about my weekly numbers as I was being very closely monitored with a visiting nurse 2x a week and seeing my doc every other week. I know low white count can be a sign of all kinds of medical problems besides cancer. Sorry but thats about as much as my low white count knowledge goes.
ChristineSCC 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  | | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Thank you Christine. I read your post to our friends and they took comfort in hearing someone in a similar situation and it was ok. The marrow has been drawn, now it's the old wait and see game, which unfortunately in this case, takes 2 weeks.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | I thought I'd give an update, our friend's bone marrow test was negative...no other cancer. The theory is is numbers are just low from the insult to his system that was treatment.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I think all of us felt "insulted" by that darn treatment! 
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Indeed Uptown. During our visit back to The U of C hospital yesterday, we went by to check out the new hospital they opened 2 weeks ago. The head and neck patients have been moved to beautiful new rooms on the 10th floor, spacious with sweeping views of the city and Lake Michigan...quite different from the crowded old hospital across the street where Vince was a patient. As gorgeous as the new facility is, seeing folks in active treatment, going to and from radiation with their red necks and faces, was a sobering reminder of just how absolutely gut wrenching those months were.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
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