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birdy48
@birdy48

Posts: 9
Joined: Aug 26, 2016

classical hodgkin's lymphoma

Posted by @birdy48, Aug 26, 2016

Hello, My name is Roberta and I was dx with Classical Hodgkin’s lymphoma in 2014. I was at Duke U. in Durham, NC. My treatment was 2 times a month for 6 months. I was treated with ABVD. This is the standard of care at Duke. It went well, that is I survived it all. Truely do not remember all of those months because it was so intense. Lots of the side symtoms I had were typical. At least as typical as they can be in my situation. Mouth sores, Gastro intestinal pain. Back pain and shortness of breath. I stopped taking the medication which gave me the shortness of breath, about six weeks before the chemo ended. Nurses are so nice and patient with Cancer people. my mid – way through PET scan showed I had no more cancer present. My final PET scan showed that all the cancer was gone. That gives me a decent prognosis. Took some months to feel semi human again.. Yet I am now beginning to digest what happened and that I truly had cancer. I feel vulnerable and yet hopeful I will not have a recurrence.

REPLY

Welcome @birdy48. I think fellow Connect members who have been through cancer treatment can relate to what you’re experiencing. The treatment phase is intense. We dedicate all our thoughts and energy to treatment sessions, managing side effects, navigating the health system, dealing with family, life, work and setting some of those things to the side lines. Then treatment is done. Even with a great outcome of no evidence of desease (NED) and a good prognosis, one is left exposed – as you put it – vulnerable. What now? Fear of recurrence is real.

I bet @lacey @johnwburns @survivor1 @hopeful33250 would have more to add to this discussion.

Birdy, we look forward to getting to know more about you. Do you have a good support system around you? Family? Friends? Have you been able to return to work or the activities you had been doing before your diagnosis? Do you want to return to them?

@birdy48 Welcome to Mayo Connect! You state the feelings of people who have cancer so eloquently! Digesting the fact of cancer and being able to move on is a process. It’s like looking in the rear view mirror all the time, isn’t it? This year I had my third occurrence of a rare type of cancer, neuroendocrine tumor, also called carcinoid. Now that the surgery is over, I’m getting on with life, but still have a glance into the rear view mirror and wonder. Best wishes to you and keep in touch. If you can find some support in your locale, that would be great. The American Cancer Society often provides support groups! We look forward to hearing from you again. Best wishes, Teresa

@hopeful33250

@birdy48 Welcome to Mayo Connect! You state the feelings of people who have cancer so eloquently! Digesting the fact of cancer and being able to move on is a process. It’s like looking in the rear view mirror all the time, isn’t it? This year I had my third occurrence of a rare type of cancer, neuroendocrine tumor, also called carcinoid. Now that the surgery is over, I’m getting on with life, but still have a glance into the rear view mirror and wonder. Best wishes to you and keep in touch. If you can find some support in your locale, that would be great. The American Cancer Society often provides support groups! We look forward to hearing from you again. Best wishes, Teresa

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I was dx with Classical Hodgkin’s lymphoma in Oct of 2014. I finished up May 9,2014. Still I feel like I am running away from an avalanche that is happening or about to happen. When the chemo was done I never looked back. Yet it is still in front of me. I live in Phoenix, Az and I do need to meet people with cancer.

@colleenyoung

Welcome @birdy48. I think fellow Connect members who have been through cancer treatment can relate to what you’re experiencing. The treatment phase is intense. We dedicate all our thoughts and energy to treatment sessions, managing side effects, navigating the health system, dealing with family, life, work and setting some of those things to the side lines. Then treatment is done. Even with a great outcome of no evidence of desease (NED) and a good prognosis, one is left exposed – as you put it – vulnerable. What now? Fear of recurrence is real.

I bet @lacey @johnwburns @survivor1 @hopeful33250 would have more to add to this discussion.

Birdy, we look forward to getting to know more about you. Do you have a good support system around you? Family? Friends? Have you been able to return to work or the activities you had been doing before your diagnosis? Do you want to return to them?

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I Have a daughter and a son who live in Phoenix, AZ as I do. I rarely speak of my cancer to anyone. I am 68 years old. I do not feel that old yet I am. I would like to work maybe go to school and take up a new vocation. Yet I am tired. I have not seen an oncologist here in Arizona. I was dx and treated at Duke in Durham, NC. I have a passion for embroidery. Specifically Sashiko a form of Japanese needle work. I read quite a bit, yet I feel I need to followup on my cancer stuff. When I read here about others with Cancer I cry. Just makes me sad. I have three dogs two are strays. I have nursed Jullian back from near death. They mean so much to me.

Hi birdy 48, I just added a comment to survivor 1 regarding keeping active, It is about the Livestrong program offered in every state ( city ) at the Ymca and its free. They are all cancer recipients and we talk about our journey, and exercise , it is a good way to let “go” and forget for awhile. Hope you can join and get away from the house and the doggies, I love my guys so much, but they need some time away from me also, Good luck and God Bless, Lacey

@birdy48 Hi, I’m glad to hear from you. I found a cancer support organization in your area. Here is their website: http://cscaz.org/. Their phone number is (602) 712-1006. When I goggled “cancer support in Phoenix AZ” there were several other groups as well. Best wishes as you find a group that will meet your needs. Living well with cancer does take a village, so to speak. Keep in touch and let us know how you are doing. Teresa

@hopeful33250

@birdy48 Hi, I’m glad to hear from you. I found a cancer support organization in your area. Here is their website: http://cscaz.org/. Their phone number is (602) 712-1006. When I goggled “cancer support in Phoenix AZ” there were several other groups as well. Best wishes as you find a group that will meet your needs. Living well with cancer does take a village, so to speak. Keep in touch and let us know how you are doing. Teresa

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Thank you so much. I am amazed. Your kindness is well much appreciated. Roberta

@hopeful33250

@birdy48 Hi, I’m glad to hear from you. I found a cancer support organization in your area. Here is their website: http://cscaz.org/. Their phone number is (602) 712-1006. When I goggled “cancer support in Phoenix AZ” there were several other groups as well. Best wishes as you find a group that will meet your needs. Living well with cancer does take a village, so to speak. Keep in touch and let us know how you are doing. Teresa

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Dear Teresa, I appreciate your finding a cancer support group in Phoenix for me. The one you found is a community, and I am going to get involved with them if it is possible. They are not to far from where I live as well. I wanted to say to you also that I am interested in hearing about your life and your journey with cancer. I did not respond to that in my first posts. If you would like to do that. Roberta

@hopeful33250

@birdy48 Hi, I’m glad to hear from you. I found a cancer support organization in your area. Here is their website: http://cscaz.org/. Their phone number is (602) 712-1006. When I goggled “cancer support in Phoenix AZ” there were several other groups as well. Best wishes as you find a group that will meet your needs. Living well with cancer does take a village, so to speak. Keep in touch and let us know how you are doing. Teresa

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@birdy48 Hi Roberta: I’m glad to hear that the group I mentioned in my last post was close by. If you need any information about other groups, let me know. There were several listed in Phoenix. You asked about my journey with cancer and it has been a unique one that started in 2003. It is a rare form of malignancy called neuroendocrine tumors (also called carcinoids). They are so rare that the disorder is listed on the Orphan Disease list. I have had surgery for them three times. They are not typical cancers but very slow growing, therefore surgery is the answer for them. They generally cannot be seen with traditional x-rays, CT scans, MRIs, etc. A special scan, called an Octreoscan is used. They do not respond to traditional chemotherapies or radiation. Traditional cancer treatments like chemo and radiation are meant to stop the process of the cell division of regular cancers and does work with a slow growing cancer. Carcinoids usually form in the gastrointestinal tract as mine did. I’m fortunate that most have been found while quite small if they get large they metastasize, usually into the liver. I’m fortunate that has not been my case. Well that is my story (the short version). Thanks for asking! Best wishes and let me know how the support group works out for you! It’s nice to have you as an online friend at Mayo Connect. Teresa

Hi Birdy 48, I believe you sent the response to hopeful”, instead you sent it to me ” Lacey” Just checkin’

@lacey

Hi Birdy 48, I believe you sent the response to hopeful”, instead you sent it to me ” Lacey” Just checkin’

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Hi Lacey,
Email notices of all the messages posted in this discussion are sent to all the members taking part in the discussion. That means we have access to a whole community of people.

So great to hear about the Livestrong program you attend at your local YMCA. Combining physical activity with support from other cancer survivors sounds like a great pairing. What activities do you do?

@lacey

Hi Birdy 48, I believe you sent the response to hopeful”, instead you sent it to me ” Lacey” Just checkin’

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Thanks Colleen, that explains why I getting everyones mail, interesting, keeping up. I do enjoy
the livestrong program, there are 15 cancer recovery or in treatment at this time, so much to learn
and very nice socializing. We walk , the other day , we walked around the YMCA building, huffing and puffing at the finish line haa. Than we worked on the machines, did around 10
minutes and felt invigorating, I go again today, looking forward to it all. I feel much better and I am
not so tired these days, its working. Hope your all doing great. Lacey

@lacey

Hi Birdy 48, I believe you sent the response to hopeful”, instead you sent it to me ” Lacey” Just checkin’

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You’re welcome. Here’s more information how you can set your email notification preferences http://mayocl.in/2coxXJN You can help tailor the messages your receive to be relevant to you.

@birdy48 Hello Roberta: I just noticed that it has been awhile since we have heard from you. How are you feeling? Did you start attending a support group? If so, has it been helpful to you? We would love to know how you are doing.

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