All Members Please Read!

As a new forum member (my mom has metastisized melanoma), I have been reading as many comments as possible and responding when appropriate.

I am wondering what you all think about posting a response to a few questions I have and providing answers that would benefit current and future readers?  I am not familiar with forum policies and procedures so this may already be in practice so forgive me if so.

It seems that the emotional response to the disease is more random, spontaneous, personal,  and variable therefore difficult to summarize in an abbreviated way.  However, some information may be helpful to list as  initial or separate post.  For example, if you were to post the following info:

Date and name of diagnosis

Initial doctor of diagnosis

Referred and/or current doctor or facility including date of first appt.

(if known) Treatment Plan

(if known)Duration of treatment plan

And for those who are not newly diagnosed, the following questions could be answered:

Experience during treatment including drugs used, doctor/hospital relationship, and emotional wellbeing

Outcome of Treatment Plan upon completion of drugs and therapy

Update of health since completion of treatment plan; this would include recurrences, additional health problems, cancer free experiences, lifestyle adjustments or how you resumed your previous lifestyle, ongoing therapy (of all kinds), emotional well being, and general follow up that would benefit other readers.  Basically, this would complete a sort of informal profile of your experience that would allow other readers the benefit of experience from beginning to end. 

Last, I think it would be helpful to ALL to list any thoughts, prayers, resources, ideas, medication, therapies, etc. etc. that were helpful before, during, and after the experience.  Well, there's no after but I mean post-treatment.  For example, you could list another informational website, a meaningful poem,  diet ideas, or anything you found beneficial in your experience dealing with cancer.

 Last, really last- how about mentioning outside resources that you've used or know of?  There are many foundations and groups willing to provide assistance.  You could mention the resources you found helpful/not helpful while encouraging or helping newer readers when they need the assistance outside of what this forum can provide.  For example,  you could mention that the American Cancer Society provides free educational materials including a coloring book for kids and provide the link and address.

We could also add a question for readers to indicate if they'd like to be contacted or be willing to answer new posts--I noticed many posts did not have responses.  The posts were heartbreaking and could use a response from someone.  Just a hello.  Would there be members willing to do that?

 What do you think?  Am I full of hot air?   Has this been done and I've wasted my time!!!???? I just want to help....thought that doing a separate post with medical info would allow new readers to quickly view where/what/who/how of other members and find what relates to them.

 Please respond even if you don't have much to say- Just mention good idea, bad idea, go back to bed, get off this forum......I appreciate the feedback and look forward to hearing from any of you willing to take a moment-

Thanks- 

NanaGlo's daughter,

amy

Mother, Gloria

1995 Melanoma on back of leg, referred to Dr. Vukov, OSF oncology, Peoria, IL

1995 Surgical removal of mole

11 years cancer free

11/06 Breast cancer diagnosed; referred to surgical oncologist, surgical removal of mam. carcinoma 

12/06 pathologist report revealed it was not mam. carcinoma but metasticized melanoma.  Patient referred back to original oncologist, Dr. Vukov

1/07 PET scan revealed two other tumors, original M.D. recommended visit to cancer clinic.  Patient chose MD Anderson of Houston, Tx.

2/07 Treatment Plan begins with Dr. Kim at MD Anderson Cancer Clinic Houston Tx

Hi,

My spouse is 45 years old with malignant Melanoma that orginated  with a mole to his abdomen. It was dx. in 2003. In 2005 he had a recurrance to the groin with muliptle surgeries . The first lymph node resections with 7 outof the 7 positive  nodes. We decided to go to M.D. Anderson in Houston, Tx in 2006. He have radial resection with 11 out of the 22 lymph nodes positive. My spouse is now a stage IV as of October 2006 with14 lesions on the head, node on  his ascending aorta and nodes in the right lung. Dr. Kim is also our M.D. We fly out there every 4 weeks. He is very good and I have to say I think If we had not gone to M.D. Anderson we would be in a different place.  My thoughts are with your family. Positive thinking and family support  goes a very long  way. The Rotary House which is conected to the Hosptial is  the place to stay. If your mom needs outpatient care the nursing staff will come to your room at the hotel.If there is any information that you need don't hestitate ask. Debbie

I think the "scatterbrain posts" and random - "abbreviated"  posts reflect exactly what we all are going through. It's a very supportive and organized thought you have, really. But, most of the time, "frazzled" "confused" "scared", "out of our minds with helplessness" is the state of mind. Truly, it's good to have a well thought out plan. But, we must do that everyday to keep things in order - outside of this forum. We come here to freak out, because we can't otherwise.

It is a good reminder though that we all must have things in order. I say that honestly and without a judgement of any kind.

You said you were new - There are many meaningful, emotional, spiritual and extremely personal feelings shared here. To "outline" it belongs in a one on one counselling session or something. I know I come here to share and sometimes "freak out" - Those emotions don't always come across in typewritten words, but most of us can read between the lines.

Everyone here gets help, and advice as to where they recieved treatment, or what I did for this, or she did for that - or the patients, who give the best advice to all of us.

Having a pie chart to discern the advantages of wins and/or losses doesn't make it any easier. We live it everyday. We DO come here to share experiences and hopes and strengths, good news, bad news. Whatever.

Just stick around, you'll see. We hope and pray for all of us affected. My husband is the one who is ill, and there are many daughters out there who share your pain and helplessness. We all deal differently - but we all have the same goal. We look to each other for the strength we need to get through another day - rejoice the good days - "freak out" on the bad. (Sorry - I'm tired, can't think of a clinical word right now for "freak out") - Well - how about - Scared, frightened, helpless, frustrated, angry, alone, sad, grieving.  Those feelings are more than ok.

No one wants to be here. Join us in sharing our good days and bad days. You have to organize a funeral - In the meantime, we need to live out what we feel, because once they are gone, we will always have regrets. And actually - the "abbreviated" posts - are from those we must worry about and give the most support to in a critical time - when they need us more than anything.

God Bless - Praying for your Mom and your family.

 

 

I go to bed  and thank god for another day with him and wake thanking we have another day together. She is right as my husband says we have cloudy and clear days but we have days. deb

Lou38s THANK YOU for taking the time to write this message. BEAUTIFULLY SAID AND WITH MUCH EMPATHY!

 Nana Glo:

I am sorry yout mother has to suffer more..I go to certain types of cancer and read, even if they are not my type of cancer. I also post.  I agree about some people not receiving post but I also give a private reply as sometimes it is not appropriate, per the board guidelines to post certain personal information.  I like your idea. I am on another survivors website and the is how we operate. We look out for each other. The difference we are smaller and this site offers a valuable service and covers a few thousand people if I am not mistaken so it is a little more difficult.  I found your post as I was scrolling thru....Take care CS 

On 4/8/2007 Nana Glo wrote:

As a new forum member (my mom has metastisized melanoma), I have been reading as many comments as possible and responding when appropriate.

I am wondering what you all think about posting a response to a few questions I have and providing answers that would benefit current and future readers?  I am not familiar with forum policies and procedures so this may already be in practice so forgive me if so.

It seems that the emotional response to the disease is more random, spontaneous, personal,  and variable therefore difficult to summarize in an abbreviated way.  However, some information may be helpful to list as  initial or separate post.  For example, if you were to post the following info:

Date and name of diagnosis

Initial doctor of diagnosis

Referred and/or current doctor or facility including date of first appt.

(if known) Treatment Plan

(if known)Duration of treatment plan

And for those who are not newly diagnosed, the following questions could be answered:

Experience during treatment including drugs used, doctor/hospital relationship, and emotional wellbeing

Outcome of Treatment Plan upon completion of drugs and therapy

Update of health since completion of treatment plan; this would include recurrences, additional health problems, cancer free experiences, lifestyle adjustments or how you resumed your previous lifestyle, ongoing therapy (of all kinds), emotional well being, and general follow up that would benefit other readers.  Basically, this would complete a sort of informal profile of your experience that would allow other readers the benefit of experience from beginning to end. 

Last, I think it would be helpful to ALL to list any thoughts, prayers, resources, ideas, medication, therapies, etc. etc. that were helpful before, during, and after the experience.  Well, there's no after but I mean post-treatment.  For example, you could list another informational website, a meaningful poem,  diet ideas, or anything you found beneficial in your experience dealing with cancer.

 Last, really last- how about mentioning outside resources that you've used or know of?  There are many foundations and groups willing to provide assistance.  You could mention the resources you found helpful/not helpful while encouraging or helping newer readers when they need the assistance outside of what this forum can provide.  For example,  you could mention that the American Cancer Society provides free educational materials including a coloring book for kids and provide the link and address.

We could also add a question for readers to indicate if they'd like to be contacted or be willing to answer new posts--I noticed many posts did not have responses.  The posts were heartbreaking and could use a response from someone.  Just a hello.  Would there be members willing to do that?

 What do you think?  Am I full of hot air?   Has this been done and I've wasted my time!!!???? I just want to help....thought that doing a separate post with medical info would allow new readers to quickly view where/what/who/how of other members and find what relates to them.

 Please respond even if you don't have much to say- Just mention good idea, bad idea, go back to bed, get off this forum......I appreciate the feedback and look forward to hearing from any of you willing to take a moment-

Thanks- 

NanaGlo's daughter,

amy

Mother, Gloria

1995 Melanoma on back of leg, referred to Dr. Vukov, OSF oncology, Peoria, IL

1995 Surgical removal of mole

11 years cancer free

11/06 Breast cancer diagnosed; referred to surgical oncologist, surgical removal of mam. carcinoma 

12/06 pathologist report revealed it was not mam. carcinoma but metasticized melanoma.  Patient referred back to original oncologist, Dr. Vukov

1/07 PET scan revealed two other tumors, original M.D. recommended visit to cancer clinic.  Patient chose MD Anderson of Houston, Tx.

2/07 Treatment Plan begins with Dr. Kim at MD Anderson Cancer Clinic Houston Tx

 

Nana Glo,

Your message is well thought out and makes sense to me, also a newcomer to this forum.

B

Nana Glo,

Actually, I do have more to say about your message.

 My mother had a rare malignant melonoma behind her eye 20 years ago, and the surgeons wanted to remove her eye and the tumor, but she resisted and looked for alternatives. The prognosis given was very poor even with surgery. Her oncologist and all the other specialists thought she was nuts and pushed her toward the surgery to buy some time. I spent a lot of time in our university medical school's library researching our options.

 She finally found a new, revolutionary treatment at Wills Eye Institute in Philadelphia and, thanks to their groundbreaking work, kept her eyesight and her life - she had one recurrence 10 years ago, but the same treatment worked again and we still have her with us. That procedure is now routine for those cases.

Two and a half years ago my father was dx with kidney cancer. He and my stepmother didn't question or seek alternatives. He should have been fine after surgery to remove the kidney cause it was contained. The kidney ruptured in surgery and cancer cells spread throughout his peritoneum. He died 6 months later. I wish they had done more research on the surgical methods available, on the doctors chosen, on the medical facilities too. I'm so sorry I didn't push more into it, but that was the nature of the relationship.

I am now facing the possibiity of a malignancy and came to the internet seeking answers and options. My point in writing this is to say how important it is that we make as much information as possible available, and in as easy a manner as possilbe, to those fighting this horrific disease. I have been amazed in the last few days to see how much information exchange is going on in forums such as this one. These sites are so so so much better than the tools we had two decades ago. 

I have also seen it expressed over and over that more needs to be done to fund research, to call more attention to the symptoms of some types of little known cancers like Primary Peritoneal Cancer, to simplify referrals, etc. I've gotten carried away so I'll shut up now that you are yawning or sleeping soundly!

B

I am also new to this, but anyone in the Cleveland, Oh area there is a place that is extremely helpful it is called the gathering place. My mom felt so hopeless for the last 2 and 1/2 months since her diagnosis (you could see it in her eyes regardless of what she told us)- I took her  there yesterday and just to talk to someone that understands works wonders. She is only 49. She was so glad that we went.

I have a question to post. What happens after the cancer is removed....has anyone had any unusual things start?
I have developed "sensitivies' to things that I was not before. This may be a pattern in cancer patients. If you have have developed a problem, we might be on to something in the cancer research area of what might be the reason for cancer. Here is my insane thought: the "posion", whiched caused the cancer that has been removed, is no longer there to absorb this "sensitive" material and then the body responds with numerous allergies and or reactions. I await a reply.