| Joined: Oct 2012 Posts: 17 Member | OP Member Joined: Oct 2012 Posts: 17 | I've only had 12 rad treatments and one 6 hour cisplatin, the next one to be done on Dec 6. Most of the time I manage my feelings pretty well, but last night I didn't. I had a really good day on Saturday, spent time with friends laughing and smiling and feeling almost normal. Sunday was a good day with a mile walk with my Portuguese Water Dog,Blue, put the Christmas tree up and outside lights. I took a nap and woke up totally depressed, barely able to swallow and just absolutely miserable. My tears and sadness are so hard on my dear husband and son who is out here helping. When it starts I wish I could stop it, but it just doesn't. Part of it started because I woke up soooo hungry for something to eat, really eat. I have decided to go all liquids because everything tastes so gross, I can't get it down. It doesn't help my hair is falling out all around the bottom of my hairline. I have a rash now all around my neck that itches. I'll talk to my doc today. Okay, I'm finished whining, y'all have a good day.
Barbara/Babs/BJ Oct.8,2012 SCC BOT WITH LEFT NECK LYMPHADENOPATHY Mod rad neck dis,left, levels I through IV partial gloss microdirect laryngoscopy with biopsy bronchoscopy lingual tonsillectomy HPV rad-rapid arc imrt x35 cisplatin x3
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | It is absolutely, totally all right to feel sad, dear Barbara. Cancer is a life-changing event; some days we manage better than on other days. I am the caregiver to my husband and, even though I think I know what to expect as the treatment progresses, there have been days when I have felt I have lost control over both our lives. I now give myself little, more reachable goals to focus on, e.g. when John gets a smoothie down or when he has drunk 500 ml of ginger ale. I see these as steps forward. It has helped me feel better in my role as the "feeding police." Of course, if I feel quite frustrated, I go and have a good cry. Loads of hugs for you.
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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | It's a roller coaster ride for sure. Even if you rely on the tube, try to swallow something, if you can, or dry swallow, do some mouth, jaw exercises. Tell the doc about the rashes, could be rads or chemo or both. As you were probably told, apply directed skin care cream, ointment, but not before radiation treatment. Mine were Aquphor or Cetaphil. Try to have a better day tomorrow, if not today.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 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 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Barbara, Im so sorry to hear you are having problems! If you havent done so already try to ask at your treatment facility for a therapist or someone to talk with. This can be very helpful!
Also please update your signature to show more info. It will help other members to help you. 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: Oct 2012 Posts: 17 Member | OP Member Joined: Oct 2012 Posts: 17 | Okay Christine, please check out my signature to serif I did it correctly, please. Let me know what I need to change or add. So pleased y'all are here, well, you know what I mean.
Barbara/Babs/BJ Oct.8,2012 SCC BOT WITH LEFT NECK LYMPHADENOPATHY Mod rad neck dis,left, levels I through IV partial gloss microdirect laryngoscopy with biopsy bronchoscopy lingual tonsillectomy HPV rad-rapid arc imrt x35 cisplatin x3
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Barbara - it is ok to feel sad & it is ok to cry. There should be no guilt or shame with that - you did nothing wrong! This battle against the big C is as much of a emotional, spiritual one as it is physical. Stay strong, positive and vigilant and do not feel ashamed to ask for help. Prayers are with you during the next few weeks of treatment and wishing you all the best  Kindest Regards, Jay
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: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Honey bunches it's okay to have those days. Totally hear you on the food. TOTALLY SUCKS. Even after rads it took me a bit to get to the point where food wasn't horrid. Some still is... pop is a no go for me even almost two years out... (19 mos post treatment, 22 most post surgery today) It still tastes like chemical soup but I am okay with that totally. I don't do sugar anyway so pop is just one thing I am not missing. If you wake up hungry make yourself a soothing fruit smoothie. Even add a little ice cream and fresh fruit and toss in some protein powder. I found that chocolate, and strawberry and vanilla were okay flavors for me as I was going through treatment. Chocolate was particularly okay because even without sugar it tasted not bad. At this point you are eating to survive. good luck with the next chemo. and the upcoming rads... and cream cream cream... all over your neck. hugs.
PS for some reason food in it's natural state tasted and still tastes better to me. ;o) prepared and packaged food not so much I could taste the chemicals... ack.
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: Oct 2012 Posts: 17 Member | OP Member Joined: Oct 2012 Posts: 17 | Thanks Cheryl, I can't do chocolate, but vanilla and strawberry are okay. All I really want is the protein drink with ice cream and maybe some fruit. Doctor said yesterday he'd like me to continue to try and eat at least 10 bites of real food a few times a day. Hard, very hard. Thanks for the support.
Barbara/Babs/BJ Oct.8,2012 SCC BOT WITH LEFT NECK LYMPHADENOPATHY Mod rad neck dis,left, levels I through IV partial gloss microdirect laryngoscopy with biopsy bronchoscopy lingual tonsillectomy HPV rad-rapid arc imrt x35 cisplatin x3
| | | | Joined: Oct 2012 Posts: 17 Member | OP Member Joined: Oct 2012 Posts: 17 | Thanks, Jay. I appreciate the prayers.
Barbara/Babs/BJ Oct.8,2012 SCC BOT WITH LEFT NECK LYMPHADENOPATHY Mod rad neck dis,left, levels I through IV partial gloss microdirect laryngoscopy with biopsy bronchoscopy lingual tonsillectomy HPV rad-rapid arc imrt x35 cisplatin x3
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Barbara, so sorry to read about what you're going through. We're all in your corner, so think of us as family.
If your eating problems stem from mouth sores I recommend asking your doc for a prescription for viscous lidocaine, assuming you're not already using it. It can really help numb the inside of the mouth - although not the throat unfortunately, and can give you a few minutes' relief in order to get some food or nutritional supplement down with lessened pain.
Of course if your swallowing difficulties are muscular then a swallow specialist is a good idea.
I also found that for radiation burns silver sulfadiazine was the best, at least for when it got really bad. Until then aquafor and the other topicals are good.
Hang in there, we're all pulling for you.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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