| | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Angel
I can't help on the White blood cell issue as mine dropped from 11.6 to 7.5 but stabilized there. I could not stand the VHC and lived ENTIRELY on Ensure Plus for two months. At your stage, I was reduced to taking a sip of Ensure Plus, then stopping and swishing some selzter water around and spitting out the mucous, then another sip, swish etc. Hang in there. I did not want a PEG so suffered through this also. At the end, it took a half hour to drink each Ensure Plus. But it was worth it to me.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: May 2008 Posts: 219 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: May 2008 Posts: 219 | Charm2017, Well you have give me some hope and I appreciate your comments. It is so hard when what you put in your mouth just doesn't want it there. lol Sometimes even the toothbrush on my tongue will also start the heaves. But overall I feel I have done really well. I am still driving myself and my grandson goes with me most every day just in case he needed to drive.
Angel
SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Angel,
I too lived on Ensure Plus for about 6 weeks, last three of radiation and first three after. Make certain it is good and cold. It would also take me a half hour to get a can down. I didn't have the nausea problem, but I did have the mucous problem. I found it easier to get down in the morning because for some reason my mucous was most productive around 4pm in the afternoon. Maybe because my rad appointment was 8:30 am. You have to drink the Ensure for the protein and vitamin content unless you are adding something to the shakes that will provide them. I was told I needed 80 grams of protein a day. I was never able to get more than about 60.
Hang in there. There is always the nasal feeding tube, ugly but works, if you need it for a few weeks.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | My WBC dropped like most people but not low enough to do anything special.
Sorry about the money. I wish you were close by as I still have a case and a half left over.
Believe me I know what you mean about the nausea. It was my worse problem and I landed in the ER 3 times because of it. I have since said many times that they need to give all chemo/rad patients a port and daily hydration from the 4th week of Tx until we are out of the woods, like the 4th week post Tx. That said you still need to pinch your nose and swallow and then hold your mouth shut until the urge to throw up passes.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Alternatively, chemo/rad patients can get a PEG tube and be better equipped to avoid malnutrition/dehydration problems during treatment. (I had no weight loss at all during treatment and was fully hydrated throughout.)
my two cents, as they say.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Having had two PEG tubes for my treatments, I am in total agreement that they sure aid getting sufficient nutrition and hydration.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Hi Angel,
My husbands WBC's on Friday were 1.3 and they wanted to hospitalize him due to his WBC's...he was told that if they go much lower they won't be able to bring him back...he refused to go, so they gave him fluids and a bag of antibiotics and we went home...he is still very weak and sluggish. I too am worried about the WBC's - he is on his 10th chemo treatment and has called it to a halt...he feels very bad right now and is very weak.....that's all they could offer with him refusing the hospital.
Good Luck to you on this...
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | It's pretty typical for the WBC to drop. In my early post Tx phase I had low RBC as well so I had to wonder just what the heck was flowing in my veins. This can cause fatigue and poor autoimmune response. There are some medications to help with this (like Procrit), but time is the best healer. It is also typical for the WBC to never return to normal levels.
The immune system will be compromised for a long time so great care must be taken to avoid sick persons (especially children) and aseptic techniques when going to public places. To this day I still carry waterless hand cleaner in the vehicles and use it everytime I have to touch a shopping cart, door handle, gas pump, and any type of public digital keypad.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Paula,
I wish I could snap my fingers and all would be right. None of us want to be faced with yours and his options and I have no idea what choices I would make so lets pray for the best.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | My WBC also dropped and I also had some other wacky numbers in there too...But they said it all fell under the circumstances of what I was going through. I became dehydrated and spent my last 9 or 10 txs in the Hospital. So, be very careful the next few weeks. I'm now (well tomorrow) will be two weeks post tx and I feel a lot better. It's still not easy but it's getting better. I'm also still on liquids...some taste is coming back but it's flagrant at best. I was drinking soups and other things, then just said the heck with it...I mix it up between ensure, VHC and boost...I also drink fiber and Juven to help out. Forget about anything that doesn't help...try to go for the biggest bang. See if your Doctor can put in a script for the VHC--it has to be ordered through the Pharmacy. You can get VHC on Amazon for about 40 bucks....560 calories per can...that's like drinking 2 1/2 Ensures or 2 boosts...Good luck and stay tough.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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