| Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2010 Posts: 58 | Eshwar, Thanks so much for the info---will do my best in caregiving for John. Also I heard someplace on here that taking ice chips 15 min. before and after treatment might fend off mouth sores --? Wish we'd known that before - that was one of the worst side effects for John. Anyone have experience with that I'd sure appreciate your advice. Thank you again for everyone here on OCF - you are all angels to support us as you do!!
Bonnie
CG to husb John, 57, love of my life for 35 yrs. Dx 2/10, T2N2cMx, SCC BOT & lymph nodes. Non smoker. Biopsy HPV+. No surgery - IMRT 35X + 7 chemos cleared BOT 9/10-mets to lungs. 2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Yes, taking ice chips or sucking ice candy was recommended by my dad's MO but he did not go for it as his teeths did not permit (side effect of previous RT in 09').
John can give it a try and see if it helps.
I had also checked with MO regarding Caphosol mouth rinse but he adviced against it saying that it is not worth the money. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Feb 2010 Posts: 79 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2010 Posts: 79 | I had the Neulasta shots as well and I can't begin to tell you how much that made my bones ache! I hated those shots and was so glad when I din't have to get them anymore! They say Claritin for some reason relieves the aching bones but all it did for me was dry my nose up so bad that it hurt like hell!!
Cathi
57 when diagnosed. Heavy smoker. Social drinker. Diagnosed 7/9/09 with tonsil, tongue & neck cancer. Chemo induction (Cisplatin, 5FU & Taxotere) & 35 radiation tx + 7 Carboplatin. Head and neck CAT scan on 1/15/10 shows no cancer. 1/27/12 First PET/CAT scans in 2 years - All clear!! recurrence mid-2015 OCF supporter and avid OCF CO and NJ walk attendee with worldwide friends
*** 1-7-16 passed away unexpectedly ***
| | | | Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2010 Posts: 58 | 800 mg Motrin was helpful for the aches John had from Neulasta - I'm sure we'll be getting a refill for that. The Claritin sounds terrible! With xeristoma already how can that be any good??!? Treatments start tomorrow ... 3 long days. Need strength for us both.
Bonnie
CG to husb John, 57, love of my life for 35 yrs. Dx 2/10, T2N2cMx, SCC BOT & lymph nodes. Non smoker. Biopsy HPV+. No surgery - IMRT 35X + 7 chemos cleared BOT 9/10-mets to lungs. 2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2010 Posts: 58 | Thank you Karen. Hope Alex is doing better and the winter 'down under' is treating you alright.  Take care.
Bonnie
CG to husb John, 57, love of my life for 35 yrs. Dx 2/10, T2N2cMx, SCC BOT & lymph nodes. Non smoker. Biopsy HPV+. No surgery - IMRT 35X + 7 chemos cleared BOT 9/10-mets to lungs. 2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2010 Posts: 58 | @Eshwar, we are anxious to see this treatment shrink these tumors. How is your Dad doing?? John is getting O2 now. Breathing is harder. Just spent the last 3 days in treatment and looking forward to going home.
Bonnie
CG to husb John, 57, love of my life for 35 yrs. Dx 2/10, T2N2cMx, SCC BOT & lymph nodes. Non smoker. Biopsy HPV+. No surgery - IMRT 35X + 7 chemos cleared BOT 9/10-mets to lungs. 2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Bonnie,
My dad's doing fine and hope that John will also be fine following the O2 treatment.
I am quoting my response to your post on the other thread: [quote]Hi Bonnie, hope John's doing fine.
I do not have a medical background but like you I too researched and learned alot. I understand the challenges of caregiving. My dad would not listen to my mom so I am the one who become an arbitrator.
While he was undergoing his TPF, it was difficult for him to even open his mouth because of mucositis and he had to depend lot on semi-liquid diet. I had informed him of the consequences of abstaining food, so he never complained and started having smaller but frequent meals. I and my wife used to cook him soupy noodles with all veggies (also capsicum, onion and garlic) without any spices, which he found easier to eat. He maintained 135 lbs throughout the treatment.
My suggestion for John is that have him eat what he likes more frequently, do not force him too much. You will have to research a bit on food as well to help him.
Few suggestions, from my dad's experience: - Soupy Noodles - Cooked Porridge and Pulses/Legumes e.g. Mungbean. You can add Yogurt - Cornflakes and Cold milk - Ice-cream (probably melted) - Banana and other hardskinned fruits (check with doctor though). - Apple Juice (Tropicana 100%) - Hard boiled egg. - Coconut Water
O2 treatment will help him recover and carry on with TIC. Tell him about my Dad. At 66, he is still fighting and doing his best to maintain health.
Hope to hear from you soon. Take care, you are also an awesome caregiver.[/quote]
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Bonnie, how is John doing? I am hoping that he has recovered from previous chemo and all set for the next one. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2010 Posts: 58 | Hi Eshwar, John is doing well almost 2 weeks after last chemo. His breathing is easier, so hoping the tumors have started shrinking. The O2 helps too, especially when sleeping. He has even gotten outside in this nice weather and puttered a bit with some easy chores. He must be feeling better to do that! He is eating better too - we are trying to push more protein and calories.
How is your dad?
Bonnie
CG to husb John, 57, love of my life for 35 yrs. Dx 2/10, T2N2cMx, SCC BOT & lymph nodes. Non smoker. Biopsy HPV+. No surgery - IMRT 35X + 7 chemos cleared BOT 9/10-mets to lungs. 2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Bonnie. Good to know that John's doing well and I am sure that he will be alright by his next scan and come out clear. Waiting for that good news anxiously.
My dad's in a bad shape with onset of radiotherapy side-effects very soon, so we are trying to cope up and reorganize ourselves to get through this phase of treatment. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
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