#6318 10-16-2005 12:47 PM | Joined: Jul 2005 Posts: 150 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Jul 2005 Posts: 150 | My dad finished tx 9/13/05 and had his peg removed 10/4/05. Thanks to God and every other divine presence/energy he is eating normally again. So, our issue is that we have all these cans of Isosouce-375 calorie a can and a bunch of Kangaroo gravity feed bags left. The med place wouldn't take them so we'd love to ship them to someone in the US. I will check this post until Tuesday.
Dad Treated for T2N1M0 Tonsil Cancer August 2005. 35 IMRT radiation, 3 doses Cisplatin. Selective Modified Neck Dissection November.
| | |
#6319 10-16-2005 01:14 PM | Joined: Mar 2005 Posts: 20 Member | Member Joined: Mar 2005 Posts: 20 | We too had a hard time finding someone to give these very expensive supplies.. finally a local hospice took them and was so grateful.. such a great feelong to have them appreciate the stuff as well as celebrating that my husband no longer needed them | | |
#6320 10-16-2005 02:40 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | We are giving the feeding tube supplies and 2CalHN suppliments to John's surgeon, who will pass them along to those in need. He was delighted we asked. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | |
#6321 10-17-2005 04:14 AM | Joined: Jan 2005 Posts: 191 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 191 | I always considered myself lucky in regard to the fact that my insurance covered the cans of food and bags for tube feeding. When it came time to get rid of my stockpile, I asked my dietician. She told me that she would be happy to take it, as there are some people being treated at the cancer center who don't have insurance to cover those expensive items. Since I regularly have appointments at least monthly at the CCC, we just loaded up the cases and she came down with a wheelchair to load them into her office.
I felt a little bit better knowing that the supplies would be used for cancer patients. I had even the benefit of a donated case of food (at the time I was having problems digesting the stuff previously prescribed and she happened to have a different brand in her office for me to try before we ordered it)
Jen | | |
#6322 10-17-2005 03:50 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Jen, you Were lucky. John Alden Ins.[now Assurant Health] has refused to cover John's 2CalHN. I guess we are lucky because John hated the stuff so much that he forced himself to eat by mouth[even tho he lost an additional 10-15 lbs]so we only had to buy it for about 4 1\2 months and have enough left over to give to someone else.
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | |
#6323 10-18-2005 01:49 PM | Joined: Aug 2005 Posts: 22 Member | Member Joined: Aug 2005 Posts: 22 | We could actually really use some if you can't find anyone to donate to. Lee will be on peg forever and our insurance does not cover any of it. He uses the syringe method to save on costs, but we spend over $300 month just on food. We really weren't prepared to be hit so hard financially. Anyway, we certainly would appreciate any you could spare. I feel so funny and a little ashamed to ask. Thank You, Doreen
Stage IV scc base of tongue/larynx Total glossectomy/partial laryngectomy/radical neck dissection 4/05 followed by chemo and rad. Tonsillar Non-Hodgkin's lymphoma 1996(cured and not related)
| | |
#6324 10-18-2005 03:05 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Doreen, I would be happy to send what we have to you, if it is compatible with Lee's routine.. #1.a box of 60cc syringes with catheter tips,[latex-free]#2. 3 cases of TwoCal*HN [manufactured by Ross Nurtition} each 8 oz can contains 475 cal. We go to the next Dr. visit on Wed the 26 of Oct. so let me know before then if you can use them. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | |
#6325 10-19-2005 02:47 AM | Joined: Aug 2005 Posts: 22 Member | Member Joined: Aug 2005 Posts: 22 | Hi Amy, That would be so helpful. I checked with the nutritionist and she said that would be fine for Lee. I can't thank you enough-not sure why our insurance does not cover-they are a real pain and have so many exclusions. When Lee had lymphoma 10 years ago, we had no out of pocket expenses and we were both able to work the whole time. This disease is a whole new animal. Anyway, let me know what you'd like me to do from here. Again, THANKS! Doreen
Stage IV scc base of tongue/larynx Total glossectomy/partial laryngectomy/radical neck dissection 4/05 followed by chemo and rad. Tonsillar Non-Hodgkin's lymphoma 1996(cured and not related)
| | |
#6326 12-03-2005 06:17 AM | Joined: Mar 2003 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2003 Posts: 64 | This is my first time on the site since September. I think my subconscious needed a break from thinking about Oral Cancer for awhile after so many months having it rule our lives 24/7. I have been trying since Jack died on Aug. 17 to find someone to take the feeding supplies. Please send me a personal message so I know how to get things to you.
HIPPA is good in some ways, but the privacy sometimes goes too far when health professionals can't pass on valuable supplies.
Lowanne | | |
#6327 12-03-2005 07:04 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | The nurse-practitioner that works with my MO told me a really disturbing story about a patient they had who was very low income and had to have prescription PEG food and had no coverage for that. Medicaid wouldn't cover it because it was food. So he went to the food stamp program and asked if his food stamps could be used to pay for part of it. Nope. Because according to the food stamp program it is a medical expense!
I agree I feel very lucky my insurance covers my expenses for this, at least partially, even though I've had to fight with them about it. Assuming I do get off the PEG eventually, I'll be glad to send leftovers to anyone here who needs them.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | |
Forums23 Topics18,247 Posts197,131 Members13,319 | Most Online1,788 Jan 23rd, 2025 | | | |