| Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Hi Sue.
I had never heard of aleo vera juice so I did some quick research on the net and EVENTUALLY I found some negative side effects, but basically is is a well known herbal remedy. Most of the side effects are about it being a laxative, or having a different coloured urine while taking it and prolonged use could result in a higher risk of colon cancer. NO WHERE does it say ANYTHING about oral cancer. NO WHERE.
I feel so badly for you. You had ONLY the BEST of intentions when you recommended that she try this, are now feeling guilty for something that no doubt was going to happen regardless of what your Mom ingested. Who knows how clear the margins were before? And she only drank it for seven daYS?? Ridiculous, IMHO, to think that would cause a recurrance. Good Lord if that was the case I am sure we would see hundreds of thousands of internet articles about the extreme danger of 7 days of aloe vera juice!! You say your Mom is angry at you - but perhaps she is just upset with the situation?? You do need to talk to your Mom, explain how you feel and the fact that her recurrance was not caused by this juice. I'm sure in time she will come to her senses and realize that. Perhaps you could even be in on a conference call / skype with her and her oncologists next time she goes for a visit?? You could then explain your concern directly to the oncologist at the same time as participating in the treatment plan.
Hugs to you. Let this guilt go. Its not your fault.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Swati - the alo Vera juice don't cause a recurrence - it may have highlighted the problem - by bringing it to her attention, but likely - it was the there growing all along. Hugs try not to worry too much.
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 2011 Posts: 19 Member | OP Member Joined: Sep 2011 Posts: 19 | Thanks Donna and Kelly,
you are both blessing. I just feel so bad. It's good to take it out. Appreciate all the hugs. I just feel helpless against this dreadful disease. I wish there is some cure some hope somewhere. I will update you of mom's condition, dad is the only link between us. Mom has been discharged from hospital as her onco doesn't know what to do. He sen message thru his assistant that they should come after 5days, and he will decide on the procedure. I just hope he doen't remove the whole tongue. I am very worried and you guys are my lifethread now.
Thank you, thank you so much,
swati | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Swati, Your mom is just looking for a reason for the recurrence, and probably she is not thinking too clearly at this point. There is no way a few days of aloe vera could cause cancer in her mouth. If I am reading this correctly she did not have any surgery on her tongue the first time? So her primary was not removed, although radiated. For oral tongue cancer, which your mom has, the preferred treatment is surgical removement of the lesion, then radiation and chemo if needs be. So this was cancer that was not taken care of by the radiation. If I am reading this wrong, please excuse me.
Anyway, my hope is you will find an oncologist who knows exactly what to do, which will certainly include some form of glossectomy. Keep in touch. Best, Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | 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 | Sue, please do not be so hard on yourself. Your mother should know better than to point the blame finger your way. Anything you have done and suggested she try was to help her. There is no way that aloe vera juice caused your mother's recurrence. It is just something unfortunate that happened. Do not let this get to you!
I have seen many people go thru radiation only to have another round of oral cancer a few months later. It happened to me also. All it takes is for one teeny tiny cell to have hidden from the radiation to cause a recurrence. There is nothing you or your mother did to change this from happening.
Some people focus on what caused their cancer and never stop looking for an answer as to why they got sick. For many patients, there is no known cause for oral cancer. Some patients will try to figure out what went wrong in their body to cause their illness. Sometimes its just a person is predisposed to become a cancer patient and possibly their weak spot was in their throat. Thats just my way of looking at things.
I know you are very upset about the recurrence. Just going thru treatments once is enough to make all of us oral cancer patients fearful of getting it again. Try to stay positive, we are here to help support both you and your mother. I know being a caregiver is a very difficult job! Patients can show their emotions while a caregiver must cheerfully try to help even when the patient gets stubborn and moody. I think caregivers are very special people, they are angels!!! At least with a recurrence you already know the medical jargon, have the doctors lined up and know roughly what to expect with testing, medications, etc. Dont forget we are here for you, its ok to lean on us.
Best wishes!
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 2011 Posts: 19 Member | OP Member Joined: Sep 2011 Posts: 19 | Thank you dear christine and anne for being so kind. Mom had surgery to remove the tumuor. The onco said he had removed it completely, but I read the path report after surgery and it says that the margins are JUST clear of the tumuour. Mom had radiation for 71/2 weeks and it was a scary experience.
Thank you guys for being here, you give me courage and hope to go by the days otherwise I was getting suicidal.
Thank you.
swati
| | | | Joined: Sep 2011 Posts: 19 Member | OP Member Joined: Sep 2011 Posts: 19 | hi Guys,
My brother flew to india from california on wed and he got mom's cat scan done, forcefully. the tumour is in left side of the tounge in the middle layers and it is 2.5cm/2cm/3cm. it is pretty big, and mom's onco was delaying things by not doing cat scan or wedge biopsy. Now he is ready to do the 2nd time surgery, but as the tumour is in center of the tongue till left lateral margin, it is going to be tricky he says. Thank good ness, my brother is there to oversee things. i have told my brother to scan the cat report so I can share more details with you all, but I think he is worried to share the complete information with me, knowing my mental state. i shared Miss kate' website with brother so he can get more information. I will update you all about the ct report once he tells me more. right now he also is focussing on the surgery.
thanks again for being here with me. Youcan all call me sue.
sue
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Hi Sue,
Your mother is fortunate that you and your brother are attentive and assertive advocates! It is frustrating to have to push hard for something that you know is needed.
I hope you are able to feel a little more relaxed now that your brother is in India with your mom. If at all possible, please try to distract yourself with other thoughts or do things to keep your mind busy. I would hate to see you wear yourself out with worry.
Sending wishes for your mom to receive the best care possible. And, I hope that you and your brother can rest a little easier knowing that she will have surgery soon to remove the tumor.
Take care,
Sandy xoxox
Last edited by Sandy177; 11-12-2011 09:32 PM.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | It's great your mom now has someone present who can advocate for her - hopefully the urgery will go well. Please to let us know how she's doing... Take care..
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 2011 Posts: 19 Member | OP Member Joined: Sep 2011 Posts: 19 | Hi!, My mom had surgey on monday, they removed 1/2 of her tongue. The tip of the tongue also has been removed with 2 front teeth. She is in the ward right now. The tumour was big. But she still continues to have ear pain, even after the affected part removal. They are giving her pain killer injections, but a little concerned about the ear pain. The CAT scan showed ear canal is fine. They thought that the shoot ear pain is due to the tumour. Anybody has any suggestions. Mom can't speak or eat right now.They are feeding her through the feeding tube.
Thank you guys for all the support. I would have landed in a mental asylum, if not for this forum.
Thanking you, swati | | |
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