My husband will be getting Erbitux as we found out today he is not a candidate for Cisplatin due to neuropathy. Any one have experience they can share? He is particularly concerned about the rash- not so much about the appearance but more about any pain associated with it. Thank you.
I had the "rash". I just thought it was much more like a case of adolescent acne. My son is 15 and we both had the same face. I suddenly remembered my days in high school. No pain but a little uncomfortable in public. It didn't last long and my doctors liked the fact that I had it. Said that this showed the Erbitux was being effective.
Lady,
Please ask your MO about recent concerns of recurrence links to Erbitux as the only chemo with radiation. Has Carboplatin been dismissed as well?
My husband had the rash bad...even up in his scalp...we called it the "benjamin button" affect, he definately looked like he was aging backwards. Once it started to heal, I helped it along with some neosporin. Good news was, in the scheme of things, it came and went pretty quickly. Also, it was our understanding that the rash was a good sign.
Thank you everyone for the helpful information.
David: I did ask the MO at Moffitt and she they don't know recurrence rates of Cisplatin vs. Erbitux- there is no scientific data to support one way or the other. They are doing clinical trials now to determine this (and Cleveland Clinic told us the same thing- with HPV+ there is a belief that less toxic chemo and radiation may do the trick- but there is no scientific data to support this one way or the other). She told us when she started her career the same held true for Cisplatin- at that time it was not known how effective it was until it was thoroughly studied.
Not sure about Carboplatin- she did not mention- and wonder if he was excluded for same reasons (pre-existing significant neuropathy). She said Erbitux is choice number 2 when Cisplatin is contraindicated for his stage and type of cancer and it is FDA approved for Head and Neck cancer. They seem to be very on top of the latest and greatest at Moffitt and in fact last week had Maura Gillison there. She said we are looking at a "curable cancer" here and it is important to consider quality of life- if his neuropathy got worse with chemo my husband would not be independent- he would need help with dressing, buttoning, etc.. and may not even be able to work and use a computer. She said you don't know until you give it if that will happen or not, but once it does, it cannot be undone. So I trust their advice and my husband is comfortable with his decision, just a little worried about the rash.
Don't worry about the rash. The rash means the Erbitux is having the effect they want. You might want to look up Charm if you have questions about the Erbitux only route. Maybe you already have. I haven't gone back in the posts.
I won't say much else because I am not a Dr., but Charm has said and experienced plenty about/with Erbitux.
Kathy
Lady1
If platinum based chemotherapy like cisplatin and carboplatin would excerbate your husband's neuropathy, then Erbitux is a reasonable choice. My comments are on when the patient does have a choice between platinum and Erbitux. Here your doctors have determined there is no platinum option. The rash is indeed a very good sign. Best wishes
Charm
Hi, Lady1
my husband had the Erbitux and, fortunately, the rash to go along with it. He was on an antibiotic to help with the rash and avoid infection (sorry, I don't remember the name). Unlike real acne, the Erbitux rash is very drying. We used regular Eucerin first, and then their Aquaphor product as treatment progressed. Don't let it get away from you! Note that lotions should be applied AFTER radiation to the target areas, not before.
If you don't already, you and he should switch to a perfume free laundry detergent. A very mild shampoo and soap is also indicated.
My husband's rash started within a week of the first injection, and stop popping new spots about three weeks after the last. Best wishes to both of you!
Maria
I used 100% pure aloe (no addatives) it was easy to get and worked great more me as a moisturizer.
Thanks everyone. Had first Erbitux infusion last Tuesday and rash for about 2 days that has since disappeared. Also a headache and achy for about 24 hours. A little scary in that he had a reaction to the infusion at first and had to get benadryl and solumedrol and they slowed the rate down temporarily. I was extremely impressed with the staff's response and knowledge and want to emphasize what others have stated on this board- go to an NCI CCC for treatment. Experience and a mulit-disciplinary team approach counts and I have seen that first hand. Start radiation tomorrow- how long before those effects start? I know everyone is different but from what I have read and heard it builds over time and the first week is not too bad typically?
Hi usually 3-4 weeks then the effects begin to show. At week 4 I was beginning to feel it and my tastebuds tanked! So glad you are getting top notch care!
Remember everyone can be different but Cheryl's timeline is the average. Some never have any problems and some have them from day one but I would guesstimate about 80% of us fall into the average column. This is still the rtime to eat eat eat and eat more, especially all of his favorite foods. Taste is the first to be affected and that doesn't come back for many many months. When taste goes so does appetite and desire to eat and it couldn't come at a worse time so prepare him mentally as he must consume at least 2500 cals a day from now until at least the end of his first year post Tx. Also don't forget the water, 48 ozs a day. Both are hugely important and the lack of either can lead to complications on top of potentially nasty side effects.
The rash is no indication wether the erbitux is working or not. That is a false rumor. Even an oncologist that I had a meeting with told me they just tell patients that. Water consumption, liquids, should be about half the persons body weight in liquid ounces daily, so everyone is different, and probably most don't drink enough.
[quote]Additionally, for the patients treated with cetuximab, overall survival was significantly improved in those who experienced an acneiform rash of at least grade 2 severity compared with patients with no rash or grade 1 rash (HR 0�49, 0�34�0�72; p=0�002).[/quote]
Paul, I think your oncologist might have been having a bad day when he stated that there was no correlation between rash and effect. There are dozens of studies that show there is a survival benefit associated with the rash caused by Erbitux. As there are too many to cite, I have just inserted a quote from the Bonner group whose work is probably most recognised when discussing Erbitux.
For those who want to read the whole thing, publication is Bonner et al. The Lancet Oncology Volume 11, Issue 1, January 2010, Pages 21�2
Of course there are always exceptions to the rule ... the appearance of a rash does not guarantee survival, and neither does the non appearance of a rash mean certain failure. This is possibly why the oncologist makes such a statement as the lack of reaction of the patient does not seem to cause the patient to have a switch of therapy??? Maybe someone else HAS had this happen and can correct me.
Thanks for posting Karen- it was very interesting (and good to hear since my husband has an Erbitux rash). This article is also exactly what our MO and all of the cancer experts we have seen have told us.
Thanks Karen, but I read a study or assay that a rash is not indicative of Erbitux working, so I asked the oncologist, and said it was true. I also read a study that it may be an indication that Erbitux works. Like lots of studies, etc. they often have different findings. This was not my oncologist pet se, but one I had a consultation with at a renowned hospital.
In the OCF news section, there are also several OCF vetted news articles on the subject, the most recent dated January 5, 2012 and November 9, 2011.
http://oralcancernews.org/wp/?s=Erbitux+rash
As far as studies go, the jury is still out on whether Erbitux as a single agent chemotherapy works at all, rash or no rash for the majority of HPV patients. Some doctors say it's because the HPV cancers react so well to radiation that the benefit of Erbitux doesn't show up against the comparison groups, other doctors say it's because Erbitux is not effective as a single agent, others say it's just luck of the draw that the negative studies had so many of the 5% for whom both side admit Erbitux is worthless. In a few years, we'll know the results from the current clinical trial testing Erbitux vs platinum. In the meantime, it's all just opinions.
My medical oncologist at the Georgetown Lombardi Cancer Center ( a CCC) will no longer administer Erbitux as a single agent due to the high rate of recurrence in his HPV patients whom he had used it. (myself included).
It's so frustrating and scary for patients and caregivers to have to deal with the multiplicity of opinions on Erbitux from doctors and not fair at all.
Lady1: I hope it turns out well for your husband and that he is an Erbitux success story.
Charm
To clarify Charm's statement about the 5% of patients Erbitux is worthless for, it's due to K-ras gene mutation in the cancerous cells. This is very prevalent in Colorectal Cancers (around 40%) and is the reason patients are gene tested before treatment.
This happens in around 5% to Head & Neck Cancer patients "However" to my knowledge gene testing isn't standard for HNSCC patients to see if they fall within that 5%, but it should be. Where 95% won't be affected by this, it could mean everything for the 5% that fall in this category.
Great response Charm, thank you.
I asked several oncologists about the K-ras gene testing for HNSCC, like it's done for colon cancer, and was told it's not done, and doesn't apply. I only read about the 5 percent factor here before I started Erbitux, which was interesting, and was sort of happy when the oncologist wanted do small dose Taxotere in addition. I can't get most other chemos due my kidney disease, underlying medical conditions, and bad chemo reaction to Taxotere, Cisplatin, 5-FU in '09, so I settled to do Erbitux for recurrent metatastic cancer with prior cisplatin failure.
It's Minoclycline 50mg that's given for the Erbititux Rash. Two Tylenol, and Benydryl infusion are given before the Erbitux. I used Cetaphol liquid moisturizer cleansor to shower, and Cetaphol moisturizing cream.
Whoever said it before on this forum- there sure seems to be a bunch of people on here who think they are medical experts. I don't find non medical people giving expert medical opinions on the latest "evidence" and cancer protocols very helpful. Yes you all have experience with the disease- but I don't see anyone with medical degrees or oncology fellowships advising on here so I think I will look for support elsewhere... I would recommend whoever is overseeing this forum to provide more oversight on people providing medical opinions.
Lady1 I'm sorry you feel that way. No one here will tell you they know best. We're sharing information that was shared with us usually by a dr. Or through independant research. People here are basically sharing their experiences and what they have read in terms of information. Some of the members here have had good experiences with erbitux. Others have had recurrences. As a former medical professional I can say even the drs. don't know. After 11 years in school, training to be a specialist, most drs can give you a well educated guess at best, and base their expected outcomes on experience, but no dr can tell a person for sure what can and will happen when choosing one drug over another. We are all individuals with different biologies, medical histories, environments, and challenges. This is why a perfectly healthy stage one cancer patient may go on to face several recurrences and ultimately pass, when a stage IV will get through it and live another 40 years despite having the same dr., and treatment. People here just want to educate, and share information so that when you are facing a decision you don't step blindly into it.
For me erbitux wasn't an option. Initially, they had considered me for the clinical trial, however my RO and MO decided against it because I'd had extracapular extension in the one node I had involved. To them sticking with the tried and true (in this case cisplatin) was my best shot at beating this. To me that says - they didn't want to risk my life on an unknown. Clinical trials are important to the advancement of medicine absolutely but in this case with all the mixed reviews I would err on the side of caution and ask for a combo of cisplatin, and erbitux if erbitux were offered. (let's hope I never find myself in that position again, to make that choice) hugs.
Lady,
Wow it's amazing how in such a short period of time on this site that you have dissected our sinister plan to uneducate the poor souls that come here seeking support, comfort and knowledge!
Nobody ever posts that they are experts or cancer docs, we merely try and use our experience to help those that have not been through what we already have. Some of us spend hours each day trying to help oral cancer patients so IMO your comments are WAY out of line.
Should you decide to stay then I would hope that you would refrain from posting further comments until you get to know us better. If you choose not to stay then I wish you and especially your husband luck on finding another site that is even 10% as good as this site in doing what we do.
lady1
OCF forum is a package deal. You get all the emotional support from the caregiver community but you also get opinions. It's no problem if you chose not to listen to them. Most all of us rely upon our doctors' opinions, it's just that with 8.000 plus members, the difference between "expert" doctors on oral cancer protocols becomes crystal clear in a way that an individual does not get to see otherwise.
Your apparent faith in a medical degree or oncology fellowship as a badge of correct information is rather quaint IMO. I will bet you have never been a juror in a medical malpractice case. You don't know how much I wish the doctors would all agree on how to treat oral cancer and what to do. Sadly they don't.
We have spirited discussions here on those difference of medical opinions about the PEG, Erbitux, re-irridation, TSH tests and many many posters find these opinions very helpful in framing questions to their doctors. I'm sorry you don't
Still, I hope your husband pulls through fine.
Best wishes
Charm
Lady one has been removed at her request form the OCF forum data base
I really feel for her husband.
I do hope her husband makes it OK. In all the time (6+ years) I've been around here, I've never seen anyone react the way this lady did. She must be really stressed over what's happening with her husband.
I hope we see her back. Who knows what else she is dealing with. It's understandable at this stage that she and her partner will be looking for reassurance without question from their doctors - especially if she and the family are at the totally freaked out stage of the proceedings.
But yes, she's misguided in not trying to educate herself so she can advocate for her husband and do what's best for him.
Hi Everyone,
The only thing I want to point out is that this is the second woman we have lost recently. Lady 1 and Heather. Regardless of our intentions, we have driven them away when they are the most vulnerable.
I am communicating with Heather privately so we haven't lost her completely, but she was very hurt. I KNOW it was not our intentions to hurt her, but it seems some folks are just way more emotional about their diagnosis than others.
I don't know what to do different, but I hate that people are going away angry. If those 2 talk to 5 people about us and those 5 talk to 5 people....you get the picture.
I love this site and know it saved my sanity.
Just thoughts,
Kathy
Personally, I think those two were a little over the top with thier reactions. You must learn to listen with an open mind and understand that not all information recieved here is good for your individual situation. It is a shame they got mad and took thier ball home (I know there's a saying about that), but at the same time those speaking on this forum have alot of info to give and they should have stucdk around to find out more. Even a little sliver that sticks with you is better than nothing. Maybe it was just too much of emotional roller coaster for them.
I'm pleased to hear you're speaking with Heather. I'm quite new, also, and felt the harshness from some of the comments with Heather.
I am also speaking with Heather privately. She wants information and support but felt very attacked when she most needed someone to talk to. Bear in mind, as well that she is a care giver, not the patient, and it is not her decision to make on treatment and doctor options.
I realize everyone here is trying to provide information from their own experiences, and they are emotionally charged experiences, to boot, but if someone asks people to back off, they need to listen. This is supposed to be a place where people listen, and not judge, and I can see very much how she felt judged.
This saddens me. There is so much valuable support and information here on this site. I really hate to see people leave because they felt threatened or intimidated. I really hope they return eventually.
It is interesting how lady1- an unregistered user - just jumped into a conversation in the middle about erbitux - something we've all discussed frequently on here and started attacking people here on the forum. I'm not sure if she'd posted other things or even told her story but it just seems odd. I'm sorry she feels that way I can't remeber if she'd posted anything prior to that but the conversation initially started as a sharing of info about the drug between various members who've had both good and bad experiences with it. So I don't know that the intent was to scare her away at all, rather just reply to her posting.
As for heather I'm sorry - i totally understand she's worried and upset and has a lot at stake here. I know she has young children and a husband she's afraid for. I also know she feels she made the best decision for her family, and husband. And I truly support her in that - but when you seek out support of some of the people who've been through it then you have to understand that you're going to hear the good and the bad, because we've all seen both. And after a while here you see a pattern. Things that work, things that don't, and learn to recognize signs. One of the things I have noted is that people who seek out the best treatment at the best hospitals tend to do better - this is why the people on the forum say this repeatedly - its advice that we all impart because it's so important. What a person chooses to do with it is up to them absolutely. I just guess most of us don't want to deal with losing another member and having to hear the regret of... I wish we had gone here instead.... I think we were all trying to help - my initial response to her was that if she was close to mdanderson that was the best hospital to be treated at. She had said something about convenience etc... This is why I mentioned it. I know a few of the other replies she got were more harsh but because she was already so upset I don't think anything would have helped. I know she needs to feel secure in the decisions they've made. But the reality is, cancer does that, it plays with your emotions, pulls the blanket right out from under you and makes everything uncertain. So in seeking out the emotional security of a medical professional you trust sometimes we put blinders on. And that is the unfortunate thing. You have to feel comfortable in the decisions you've made - absolutely - but you also have to advocate and question as well. I'm glad a few of you are still talking to her and I'm glad she's around. It sounds like she needs a lot of support. Best of luck to her and her hubby.
The message sent is not always the message received (and vice versa).
My own �message received� from recent comments is this:
The comments that questioned Charm�s post about his experience or knowledge or the truthfulness of his comments saddened me immensely. I�ve been around this forum long enough to have seen over and over, the extent or Charm�s altruistic compassion, experience, impressive knowledge and generosity in helping anyone and everyone who comes here for help even while undergoing some difficult days himself. I fretted over this for some time.
And then, when I saw our founder Brian�s comments in support of Charm, it touched me to the core of my being because I saw the depth of his caring and concern for someone who had done so much for so many of us.
This is just my opinion, but when what appears to be an unkind comment is made to someone you care about, it seems natural to me to want to protect and support that person.
When we post things here or anywhere, we do not have the advantage of face-to-face communication, which can impact how a message is received. That�s where the �Preview� option can help should we want to �tone it down� before we hit the �submit� button.
There is such a wealth of information, experience, compassion and support available on this site for anyone going through the craziness of surviving oral cancer. It�s like no other anywhere. I do hope that the two who left us recently will reconsider and come back. And everybody will �play nice�.
I wasn't going to comment on the two women leaving but in fairness to Lady1, she was a registered user and actually started this whole thread so she did not just jump in. She did ask Brian to unregister her because she objected to posters citing studies without a medical degree. Rather naive faith in a medical degree IMO but certainly her right.
As for Heather, I can understand why she felt beleaguered, since the chorus on OCF can be quite deafening in insisting on certain approaches. I certainly encountered that when I first joined and challenged the conventional wisdom of OCF posters on getting a PEG, acceptable weight loss, excessive neck dissections and even getting second rounds of radiation.
I'm glad there are some members sending PMs to Heather (Lady1 would need to be contacted thru her private email if she had posted in her profile when she was registered) as it was a PM from DavidCPA which helped decide not to just write off the OCF forum.
But IMO there will always be posters who quit because they have one of more expectations which are inconsistent with public discourse even in a moderated forum. I started to enumerate them and realized my wording would just cause unnecessary dissension and discussion. Suffice it to say that while it's sad when posters quit, it would be worse if the OCF forum was reduced to only "poor baby - I wish you well" posts (not that there is anything wrong with those types of posts, I certainly have liked getting them myself on OCF and found them supportive) for fear of upsetting fragile personalities. Sometimes the decisions and positions evinced by posters should be challenged and not supported. We are all in this together and it's not easy.
In the past, other posters have come back to OCF after their first sulk is over. I hope these two do also.
Charm
[quote=Charm2017] Suffice it to say that while it's sad when posters quit, it would be worse if the OCF forum was reduced to only "poor baby - I wish you well" posts (not that there is anything wrong with those types of posts, I certainly have liked getting them myself on OCF and found them supportive) for fear of upsetting fragile personalities. Sometimes the decisions and positions evinced by posters should be challenged and not supported. Charm [/quote]
Exactly. I do not think that we are being helpful if we stand by and do not challenge something that, in our experience, seems offtrack and possibly life threatening. In doing so, we risk making the poster feel second guessed but in the scheme of things, feeling second guessed is by far the lessor of two evils.
Deb
Absolutely! I think it is also a sign of respect for the person being challenged. It shows you care enough about them to want to make all the info and experience possible available to them in making an informed decision. That's what we do here, right? We share knowledge and experience, plus caring and concern.
It is possible to challenge the assumption without challenging the poster personally. Changing 'you should' to 'I think if I were in your situation' provides the same information without the personal attack. Anther useful phrase is: 'it's hard to argue with the numbers' In this case, its the numbers fault, not yours or the person you are responding to.
Please remember that some of these individuals have never posted on a forum, and have not learned to NOT take things personally, regardless of what is said. It is very frustrating when critical information is being ignored, but shouting is not always the best response.
Maria
Maria,
In Heather's case, no one shouted before she got upset. We were all just suggesting a second opinion and when she indicated that she felt attacked, I immediately explained that she needed to understand the history that we had all seen and why we were so passionate and also that I had experienced a little of the "feeling second guessed" when I first came to the board but realized that it was an effort to help me. Several posters tried to explain why we were so concerned especially since we were reacting to her word "easier."
If you go back and read the entire thread, you will see that the more "passionate" discussion came after we were attacked for being heavy handed.
I think you are correct in saying that some of this was due to inexperience, particularly on this board and that is why I chimed in so quickly to try to tell Heather that we were just concerned ...not attacking her personally.
I think we all want her husband and anyone else that makes contact here to have a good outcome(s) and that in the end
we really do care a lot.
Deb
Hi, Deb
[quote]you will see that the more "passionate" discussion came after we were attacked for being heavy handed[/quote]
There's the one of the problems right there - when these passionate discussions get going, all sorts of people feel attacked, and things go downhill from there. Another way of looking at it is that she was defending herself. Its like looking at the moon - do you see the man in the moon, or the silhoutte of the lady.
Maria
[quote=Maria]It is possible to challenge the assumption without challenging the poster personally. Changing 'you should' to 'I think if I were in your situation' provides the same information without the personal attack. Anther useful phrase is: 'it's hard to argue with the numbers' In this case, its the numbers fault, not yours or the person you are responding to.
Maria [/quote]
Right ON, Maria. We're all adults here and not one of us wants to be told what to do, no matter how correct the advice is. "You should..." can easily be changed to "I would..." and the entire tone of the response changes. Also, I always try to remember how I felt in those first few days after diagnosis and what I thought I knew about oral cancer and its long term effects. I thought I'd never have a normal life again and I was very, very scared.
These are all really good comments and suggestions.
I know I personally am guilty of speaking in these inappropriate tones. I think we can all learn from these posts to state things in a less "absolute" manner, in one that allows some room for the subjective nature of our opinions to be fully expressed. I am certainly not opposed to posting something that has strong science behind it. But rather than state that individually, it would be better to state that in Dr. so and so's paper, he looked at X and found Y, this kinda of sounds like it could apply to you�
After all we are all knowledgable lay people, do not have intimate knowledge of any given person's situation medically, and we should state things with plenty of "wiggle room" for them to take the science idea to their doctors for direct consideration, knowing that it came from a non doctor. We need to fill their need for "probable, likely answers" with our experience, that can give them some guidance for pursuit and action, and never to speak in absolutes as it relates to them individually. I can tell you with no uncertainty a variety of scientific absolutes (at least as we understand them today) related to this disease in a given population of people. I can less so tell you if any of that applies to a particular person, even if they sound like a text book example here on the forums.
Some of us are more science oriented than others. But that science is not universally applicable. Passion, which many of us have in spades, must be kept in check, as it can easily be interpreted in a negative, pushy manner.
Good stuff from all the recent posters. Good lessons for a better forum.
I agree with most of the comments here, and certainly everyone has good intentions, which isn't in doubt. You know what they say about the road to hell...
I actually spent a fair bit of time reading various threads before jumping in so I could get a flavour. Plus I'm a pushy broad, a lawyer, a taurus and born under the sign of the ox, so really, it's impossible to intimidate me.
I will pass on to Heather the general thoughts here, so she knows where things are at in hopes she will return. For those who are interested, her husband came through surgery well, and is awaiting his chemo/rad series. He is, in fact, back at work at this time.
So glad to hear he is doing well. Wish him luck with rads and chemo.
I do apologize I did note this morning that Lady 1 was a member and originated the post. I do understand her concern with the citing of medical information. But part of what we do here is read, study, and ask questions. This combined with the fact that we've gone through treatment and invariably grilled the drs on different treatments etc... this gives us a fairly solid knowledge base (combined with an element that most drs don't have the option of obtaining and likely would never want to which is; a first person experience with the treatment). Am I saying we know more than the drs? hell no. I am saying we're a solid knowledge base period. Truth be told you can tell just by the varied answers from drs. that not all of them read the newest info and do try to stick to the tried and true or what the latest "trend" is (and I use the word "trend" loosely). So educating yourself really is a good thing and hearing all sides gives you the opportunity to make an informed decision. I find that some times when people feel threatened by what they hear, it's perhaps because they are already questioning their own choices. This site is not meant to attack by any means.. I absolutely agree tone has everything to do with how things are acceped. I found that there are always conflicting viewpoints on certain things. When that happens I look into it myself read as much as possible, ask questions of the people in the know (often a dr.) and then make what I hope is an informed decision. This is what anyone facing treatment, and this disease should do. After all a dr. who is caring for you will likely have your best interest at heart, but they also have another 1000 patients, so even if they are the most caring dr known to mankind they just simply cannot look out for you or your interests better than you or someone who loves you will.
Hi all.
My husband is doing well after surgery and is starting chemo and radiation next week. Thank you for the good wishes for his recovery.
My issue was not that people were questioning me, it was the tone in which it happened. My objection wasn't to the suggestion that we go to MDA, it was to the immediate assumption that we weren't going to MDA because we couldn't be bothered to drive to Houston and that was it. No one here knows our life's story, or anything about our circumstances other than the info I put in my sig line regarding my husband's diagnosis. It made me feel like I "owed" the forum a long explanation of what went into the decision to stay local rather than go to MDA, and that is tremendously alienating. People said we should go to MDA, I said there were reasons why we weren't, and it needed to stop at that point. Someone on my intro thread something like "When we see that you're not going to an NCI CCC we just worry and want to know why." Frankly, what needs to happen is you need to take my word for it when I say that we have considered the option with our medical team and within the context of our family's circumstance. Taking umbrage at being spoken to with such disrespect when I don't offer up the explanation that you (the collective you, not any particular poster) think you deserve doesn't seem to me like taking my ball and going home.
I am in no way a "fragile personality." I don't expect strangers on the internet to coddle me and protect my sad little girl feelings with only soothing words and gentle affirmations of all my life choices. However, I certainly didn't expect to be told to "get [my] spinning head out of [my] behind," and I'm not the sort of person to passively take that comment even when I'm NOT in the immediate stages of dealing with the fact that my husband has a life-threatening disease. I think that comment is the most hurtful thing anyone's ever said to me on the internet, and I'm not new to posting on internet forums (just this one). The fact that I didn't get an official apology from the OCF administrators, just a lot of "oh, some of us are like that here" kind of dismissal, was insult to injury, if you will.
I'm a litigation paralegal so I'm surrounded all the time by smart people who don't hesitate to express strongly-held opinions. I don't have a problem with strong expressions of opinion. I do have a problem with being disrespected and condescended to, particularly after I've expressed that I've taken issue with something that's been said to me. Certainly folks can disagree that what was said was disrespectful, but different interpretations of the situation don't invalidate my response.
I'm also a victims' advocate for the domestic violence shelter in my town, and I know how to speak to people are in crisis. One of the principal rules of advocacy work is that when someone is in crisis, you let them BE IN CRISIS. That means if they don't respond to you in a way that you expect or feel is "appropriate," you just accept that their response is THEIRS and cannot be wrong. My first post here was 27 days after my husband's diagnosis with this fearsome disease, and exactly 1 week after he had surgery to remove a 1/4 of his tongue. He had been home from the hospital for 2 days, with 22 stitches in his tongue and 35 in his neck, and I was trying to help him recuperate, keep life as normal as possible for our 6-year-old daughter, go back to work, keep my house running, and not lose my mind. I was absolutely IN CRISIS. The response I got here broke my heart when I was the most vulnerable I've ever been.
Anyway, that's my 2 cents.
Well now that you've come back to post and express your perspective on things, you can also see that the episode gave people a chance to reflect on how the thread went both good and bad, and everyone can put this discussion of tone and intent to bed. Now that everyone has had their two cents as you put it - let's move on from this, and let the issue go.
Heather if you decide to stay and post now that this is over and there is more treatment ahead, please start a new thread about that in the currently in treatment forum.