| Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Thanks a lot Tammy.
Although we are currently in Melbourne, I am originally from Dunedin and it's great to hear advice from a fellow Kiwi.
Understand that HB, WBC and Platelets are hit hard from the Chemo but was just curious if there was anything we could do to slow down this decline.
Will make sure to take your advice around being safe from others while we are undergoing treatment.
Thanks
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | 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 | Unfortunately there isnt much you can do to prevent the numbers from dropping. A balanced diet might give a small amount of help.
If the white count gets too low the docs will give a Neupogen shot to boost them back up. I had to get a couple of these while going thru treatments. My white counts were very low for a good 3 years.
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: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi all,
Half way there with treatments and we are still progressing ok.
My wife did have some difficulties over the weekend with the sudden loss of taste meaning that we are back to soft foods for now. There are also a few blisters and a tight neck / throat but the pain is very minimal and hasn't warranted the use of medication for now.
MO & RO are both very impressed with how we are doing so far, but everyone keeps warning us the worst is yet to come and we should brace ourself for the next few weeks. Hence we are stocked heavily with all sorts of medications (Paracetemol / Oxycodone / Lignocaine / Cocaine Mouth Wash etc.)and are ready to roll when the time comes.
Another 3 weeks and we are done for (I do know the worse is 2-3 weeks post tx) and the day can't come sooner enough!
Thanks all for your words of support and advice - it sure does help reading other people's journey through treatment and it has really prepared us for this battle.
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | It will get harder... but prepare for the worst and hope for the best. Hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Hi Jay, I am sending all my best wishes to you and your wife. It is encouraging that she has been doing well for the first 3 weeks, so keep positive about the next 3.
I am awaiting my start date and following your journey, and it gives me hope!
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | You guys are doing great. You are positive and ready, it can't get much better than that!! Thanks for keeping us updated!! Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | It it great that Jen is doing so well and that you are fully prepared. You may have come across it already but if you put "magic" in the search bar you will see plenty of references to magic mouthwash. Thanks for the update on your journey Jay. Love to you both! Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Thanks all for your words of encouragement!
We are keeping upbeat and still enjoy a laugh now and then which helps. True story - the RO and us all laughed so hard the other day over a video of our lil boy. When we walked out of the appointment office, we had 15 sets of eyes looking at us like we were all mad!
We have been using the 'magic mouthwash' that was given to us by the nurses here and we have the Biotene gel / mouthwash for the dry mouth also.
The extra KG's packed on post-tx (that includes me because I had to eat with Jen!) is DEFINITELY the wisest thing we did prior to starting treatment and it would be the one word of advice I would recommend to everyone who is about to embark on this journey.
Perhaps its time for me to go on a diet as well since I feel SOOO guilty eating food in front of Jen...
God bless you all and we will make sure to keep every one of you guys in our prayers.
Jay & Jen
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi all,
We are now 20/33 rx treatments and will be having our 5/7 chemo session on Wednesday.
Although Jen is feeling a bit more tired with the treatments, her general condition has been very good overall and she is still off any pain medication.
Eating has been a struggle not because of the swallowing but the change of taste (salty & metallic) but I am making sure she is well fed with the supplementary drinks + soft foods.
Still waiting for the pin to drop but I am not complaining with how she has progressed so far.
Ironically, I am feeling more anxious as we near the end of treatment as I don't think I can stand the thought of my wife going through this all over again in the instance of a re-occurrence...
I know this is regular process that everyone goes through and I know that even after Cancer is beaten, it never really leaves the system but I wonder how others deal with this on a day to day basis..
In the meantime, I guess we just need to focus on getting through the final weeks of treatment and the few weeks after it ends but I hope that our story provides other some comfort and relief that the side-effects do vary between person to person.
Wishing everyone all the best on this forum and our daily prayers are with you.
Jay & Jen
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | 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 | So far so good and let's hope she continues down the easy path. Re dealing, she/you will adjust and adapt to whatever comes your way.
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.
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