Categories. Please read.

[sumeet_shah]

I have finally created categories on the forum. Categories make searching very easier. I request all of you, that when you post, please select the appropriate category, so that the question will be assigned to that category.

I have created the following categories:

(in alphabetical order)

Caregivers

Chemotherapy

General

Radiation Therapy

Resources

Share your progress

Surgery and PORT

I wish to add more. Your suggestions are most welcome. Please reply on this thread with all your suggestions, so I can incorporate them.

As for all the existing threads, I will edit each and every one of them and assign a category to them.

Also, I plan to create 'pinned' threads for some common questions like:

What are the side effects of chemotherapy and how to tackle them

What are the types of surgeries for breast cancer and their merits and demerits

My near and dear one is suffering from breast cancer. How should I go about, taking care of her

etc..

These pinned threads will make it easier for people to look for common questions and answers to them.

And once again, I thank all members for being an active part of this forum. Without your support, it would never have come up.

Please let me know your suggestions and criticisms.

Edit 1: Added more categories

Edit 2: Have finished editing almost all the past questions and assigning categories.

Edit 3: I am off to Goa for five days. Might not be able to post; though will try to, if I get to access a computer with a net there. Take care, all of you.

[Hidden]

Its good.one more thing i like to suggest that it will be more beneficial if more oncologists like you join this forum.

[sumeet_shah Administrator in reply to Hidden]

Sure. I have already invited a few.

[MsLockYourPosts TeamBCI]

I'm so glad you are now going to be able to do categories and pinned posts! I am sending my ideas in no particular order. Some might be better as pinned posts, while others would be better as categories. I don't know how health care is covered in India and if disability is something one can become eligible for, if there are rules about people taking a leave for medical necessity, etc. So you will have to consider that within the system in India, as the system in the US is very different form most places.

Newly diagnosed - My first and most important rules are to take a recording device to all appointments even if you take notes or have someone there to do it for you and to collect all of your medical records and start a file. I don't know how that would work in India. In the US we are guaranteed, by law, the right to all of our records, but must sign a form giving each doctor permission to release them to others or discuss our case - including closest family. That makes it very important to have those forms in place in case we can't speak for ourselves. When I went to the UCLA Breast Center every room had a tape recorder in it and if you didn't turn it on the doctor turned it on for you. It's amazing what you realize you missed listening at home - a combination of brain freeze because you just can't process any more and listening to what is essentially a foreign language.

When to call your doctor - especially post surgery and during chemo - eg if you have a fever at what point. With CLL we are told not to take anything to reduce the fever until we've talked to our doctor or have been seen so we don't mask symptoms.

Diet - esp a neutropenic diet (there are three links about it in my post about dealing with chemo) In India the issue of how to balance traditional medicine with common practice - integrative medicine / holistic medicine, etc.

Now what? - post treatment

Lymphodema

Reconstructive surgery (legally a doctor must advise a woman of her options and rights regarding reconstruction in California)

Dealing with physical appearance - everything from hair/head coverings and makeup to bras and fillers if one does not do reconstruction. Most doctors don't address this, but it is a major concern for women, especially, while dealing with any chemotherapy.

Financial issues

Who to tell and how much - can affect one's job for example and certainly can change friendships and family relationships in some cases

Latest Research and trials if they are available

These are just ideas that come to mind or that other CLL groups I'm a part of use - subjects that come up frequently. When we did the categories for the CLL group there was quite a discussion among the administrators and "volunteers" as we wanted a place for everything important, but didn't want too many. When we set them up we got them down to a reasonable number, partially by combining some things and pinning others, and left the last one as a non category to fill in when we realized that we had left out something really important. One thing we are considering now is a place to just share the positive - photos of family, vacations, or just something beautiful or even a little humor so that it doesn't feel like we are only about our disease, but CLL is chronic, so it's a little different. Another one we are considering, that another group uses called In the Pit is a place to just vent - let out your frustrations, anger, whatever, without being judged.

Pat

[sumeet_shah Administrator in reply to MsLockYourPosts]

Thank you very much, Pkenn, for all the suggestions. Like you have suggested, I have included diet, financial issues and Research in the categories. As for reconstructive surgery and lymphoedema, I will make a thread and 'pin' them.

[kontak TeamBCI in reply to sumeet_shah]

I would suggest to add also - Lab report (Histopathy) as it is the first report which a patient and his family comes to know & then starts searching for help.

HR,PR,HER - the most important as the further recurrence is depend on this reports

Recurrence

I think some where a cost to be mentioned from min to maximum range so that the financial provisions can be made by the family. As this is also an important aspect.

After all treatment what precautions - tests to be taken

Wigs

Chances of the near ones like sisters/mother - what precautions or tests they should like SELF EXAMINATION etc

See if any of the above suggestions you wish to add.

Also many times feel to meet all the community members - pl see if something can be done for this.

[sumeet_shah Administrator in reply to kontak]

Thank you for your feedback, kontak. You have given a good suggestion. I shall soon add pathology. Wigs and all other similar questions can be addressed in resources section. An online chat would be a very good idea and serve as a good way for all to interact.

[shirdi]

Thanks Dr. shah who is really a blessings of god for all of us.

Nice suggestion of Kontak but if not possible instead of that

I want to suggest to keep a on line chat of members once in a week for an hour or two so that each one can share so many things.

I also want to suggest that at least once in a month some doctor to be there on line for chat which will be helpful to be patients and their relatives

[sumeet_shah Administrator in reply to shirdi]

Thank you for your feedback, shirdi. Hope you are doing fine.

An online chat would indeed be a good idea, and honestly, I have been thinking of it since the time we started this forum. It will be a good way of interacting with each other, sharing experiences and I can easily get a few oncologists every week, so we can solve queries as well. I will discuss this with the HU authorities

[shirdi in reply to sumeet_shah]

thanks doctor

swelling over the hand is reduced not totally but to 60%. Though blistors are not increasing but which were there are still there. since last 4 days dressing is done in hospital. will call u today.

thanks