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Does anyone need to talk about treatments and a bone morrow transplant?

tadevine
Posts: 6
Joined: Jan 2004

I have been fighting cancer for 15 years had have learned by my treatments how to help others.I have also run a suport group for 4 years.If you need to talk to someone about your cancer or need to know what I have went through.Please ask.
Thanks
tadevine
Vietnam 1970
sniperus@tir.com

milliedwn
Posts: 2
Joined: Mar 2004

Hi we just found out about a week ago that my grandma has NHL. They are trying chemo but are very doubtful. The DR has told us she has got it in her bone marrow and she is not a canidate for a transplant. They have also said they have found it in severial more places through out her body. Im not sure how to take this all in and im not exactley sure what NHL is. Do you have any words of wisdom for me. And can you please help me to understand what NHL is. Thank you -Dawn

CURIOUSME
Posts: 2
Joined: Mar 2004

YES I WANT TO KNOW

tadevine
Posts: 6
Joined: Jan 2004

what do you need to know?

sugarone1
Posts: 2
Joined: Jun 2008

Check out the National Donor Program - 1-800-526-7809
3001 Broadway St. NE, Suite 100
Minneapolis, MN 55413
website: marrow.org

They have great information on Bone Marrow Transplants - I will be gong through one and received a bunch of valuable info.
Good Luck and God Bless

tadevine
Posts: 6
Joined: Jan 2004

NHL is a cancer of the lymph glans.You body has them from the head to your feet.That is also your amune system.It tied into your spline.
Now with it in her morrow ,they need to tell you what the percentages are.I mean is mine was 15% on the left have and 10% in the right have.Your body is divided into 2 halves.It can't go over 20 or 25%.
You need to also find out what stage she is in.How is her health and her age.It would be better if you could email me at sniperus@tir.com.
ask questions,that is how you learn about her cancer.I can help as much as I can.

donald51's picture
donald51
Posts: 59
Joined: Feb 2008

Hi Dawn, I also have NHL (follicular). If you know or can find out (1)what type of NHL (2)what stage and (3)what the bone marrow involvement percentage is you may want to look into treatments developed for patients that did not respond to or have relapsed from previous treaments.ZEVALIN(zevalin.com) and BEXXAR(bexxar.com) are developed for these situations. They are also finding great responses as a first line treatment. I had Zevalin as a first line treatment in June and am doing great. I go for ct scan tomorrow and look forward to the news. Good luck and God Bless

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

First of all let me say how sorry I am to hear about your Grandmother. I am a 20 year survivor of NHL and could tell you this and that about it but I did have a bone marrow transplant but it was my own marrow so it's very different. My cancer was not in my marrow so I could use my own marrow. I was also much younger - 39 when it happened. I would suggest that you call the Cancer Specialists number if you are in the states that is part of the American Cancer Society, they have a wide resource of information. The number is 1-800-227-2345. Hope you get your questions answered at that number, let me know if you don't. You can also Google reputable internet sites like the Mayo Clinic site but I would try that phone number first, they might have a specific site to help you understand what your Grandmother is dealing with.

I can tell you though that a positive attitude and support is very important to cancer patients so being there for your Grandmother is a big part of her treatments, knowing people are there who care. Also I am a great believer in the power of prayer and that is something you and others you know can do for her as well. Remember that in your search for information you have to remember that even if someone also has NHL and had certain treatments and outcomes that doesn't mean that your Grandmother will react the same way, even to the same treatments, because everyone with cancer is different in how they do or don't respond to treatments - even if it's the same type of cancer/the same type of treatments. Someone told me that when I was looking for answers and it was the best advice I got because you can scare yourself if you hear some stories and that might not apply to your Grandmother. So listen and learn but with that idea in mind and you will be alright.

All the best. Keep me posted. Blessings to you and yours, Blueroses.

joyce1950
Posts: 1
Joined: Jul 2008

I will be going through the second part of my first round of chemo. I have hodgkins and have just gone through a crazy week. Boy when they say side effects, they don't fully prepare you. I have been having this weird pain in my stomach and not been able to eat very well and it is affecting my daily activities. I get tired even talking for an extended period of time. I always had gerd problems, and was wondering if anyone knew any problems exist that makes it worse and what do people do about it.

sandybe
Posts: 40
Joined: Aug 2008

Tell your doctor right away, don't wait. That's what they are there for. I had terrible side effects when I went through chemo for Hodgkins and radiation was a nightmare. I quickly learned that I didn't have to suffer as much as I thought, they can usually do something to help you.

april.mcclain
Posts: 2
Joined: Sep 2008

Hi Joyce,
I had treatment for Hodgkins in 2001 and I found that my worst side effect was a pain in my bladder from the chemicals. It was usually the night of treatment, and up to two nights after that. I would wake up in the morning in severe pain where the chemicals had just set in my bladder all night. To combat this, I drank a glass or 2 of water or milk before I went to bed so that there was other liquids processing through to my bladder besides the chemicals. Just keep a smile on your face and it will help you get through this trying time!

Tom33Mi
Posts: 5
Joined: Oct 2007

im 33 and just have had a recurrence of hodgkins after 11 years clean.theyre ging to do a stem cell transplant in the next two months and i woner if anyone can tell me what to expect.im currently undergoing the rice regimen of chemo to prepare me for transplant.

Gabbym
Posts: 8
Joined: Feb 2009

Hi, i do not know if you are still out there, but i really would like to know all i can about the stem cell transplant. My husband was also in Vietman in 68-69. He has non hodgkens lymphoma, his cancer is called Plasmablastic lymphoma, a very rare cancer. Seeing as though you were in Vietman, were you eligable for benefits under Angent orange? He is trying to get these benefits and what a time we are having. Now they want him to go for a stem cell transplant, when it is all he wants to do is get well and ride his harley. As you can tell i am the caretaker. I love this man with my heart and soul and want nothing but the best for him, we have been together for 36 year, 29 of them married. This whole thing is driving me crazy. Working, taking care of him, making sure i can go to all doctors appts, getting his meds and just oragaizing our lives. I sound like i am complaining, and i do not mean to, i am just looking for answers, he has a physical with the VA next week and please pray they come across for him. It will take a lot of the burden off both our shoulders. Thanks for listening.

nhalyn
Posts: 1
Joined: Jul 2009

I should be sleeping right now but if I do not do this, I feel like I owe something to Ginel my friend.

I’m twenty-two years old and just graduated last April with a college degree. I should be busy right now with my interships and preparations for our board exam on January. I just visited a freshman night program at our college a while ago after coming from San Juan de Dios for a doctor consultation. We have an 8:30am appointment tomorrow at PGH and I should have been sleeping at this moment. But a friend called me up and I feel like betraying someone if do not do this.

I received my final biopsy report with a confirmed diagnosis from NKTI just yesterday together with my Serology report and CT-scan of neck and nasopharynx. A month and a half prior to this, I underwent a major operation for removal of neck masses (the term I can’t remember.. supra something..) at PGH under Dr. Lapena who also did my first operation (Oct 2007). With prayers from family and friends, everything went very fine. I had no complications and no facial nerve damage. I also had a quick recovery and very nice stitches too.  Thirteen days went before I got the biosy result of the removed masses. It says:

Non Hodgkin’s Lymphoma, diffuse small lymphocytic, with plasma cell differentiation, all specimens. (Dr.Dimacali, PGH)

It’s cancer. We asked for a second opinion at NKTI. After confirming the initial diagnosis, further staining were recommended to verify the condition. It was last July 9 (Thursday) that we got the result of the staining procedures. It says:

Immunomorphologic features most compatible with plasmablastic lymphoma (WHO Classification)

After reading about the condition, the doctor asked me if I’ve been needle pricked before which I denied. He then asked me if I underwent any blood transfusion before which I had last Oct 2008 because of Dengue. Then he stopped and looked at me, “We should request for an HIV testing”.

When I knew I had chances of having cancer even the biopsy results came, I read and researched about it. I surrendered everything, accepted it and asked God to fight the battle for me. I was very positive because I knew that he won’t give something too heavy for me to carry. But hearing that I might be having another condition was just too much. I sought medical help from another doctor, Dr. X from Y Medical Center. He promptly advised me to undergo chemotherapy and relayed the treatment procedure. He said that I don’t have to have to do the staining procedures anymore and even the HIV testing which he later on took back saying they reviewed my case at Y Medical Center and agreed that I should follow the previous recommendation. He even asked what my line of work was. I was supposed to have my chemo right now but circumstances seemed to tell me to wait. I have a highly aggressive form of lymphoma with a predisposing factor for an immunodeficiency disorder such as AIDS. Most patients with this condition are HIV positive. Less than 1 per cent of the population has this said Dr. X. When I told this a while ago, my friend told me how special I was.

I didn’t tell anyone of my chances of being a HIV-positive because I can’t accept it. All I have now are my family and friends but I’m not ready to dare tell them. It was hard to drift away from the people you love the most especially now. Even when I knew that I could not harm them that easily, I felt scared that they have to put a distance between me and them one day. I hated all doing sexual immoralities because of what it might have caused me. Ever since I knew, I prayed to God for good news. I so dread it that I don’t even mention the term in my prayers. Unlike my peace when I knew I had chances of having cancer, I didn’t read and prepare. I boldly told God it was way too much for me. I know that he is strong but I asked and believed that the pain be taken away. It was only me, my mother, the doctors and God who knew about the HIV testing. I asked God to give me hope. I asked him to lend me my future – to experience falling in love, having a family. I’ve always been praying but these moments were far different. I was talking to Him. He is the King of the universe but at the same time, a Father who would joyfully give a daughter’s wish. I prayed, cried and held onto the bible where his promises are written. Everything was between me and Daddy God. Back to where I started, it was yesterday when the results came.

We took the stapled envelopes bearing the results. We went to Y Medical Center to have the results revealed. It was two hours waiting for the doctor and I saw many other cancer patients having their chemo sessions while inside the oncology unit. I prayed and told mama not to worry but pray. I even told God that if the results are positive, make it negative then even when my risks were actually high. Then the doctor came. I also prayed for him. Then the envelope was the one he opened first. I held my hands together more tightly now. It was the longest time in my life. He then smiled and said it was negative.

Wow. I felt I had the biggest smile ever. That was to Daddy, who believes in me but at the same time, knew my limits. The same goes to all the people praying for me which makes me braver each day. It was already a miracle for me to feel nothing wrong except really for another mass in my neck but the CT-scan of the neck, nasopharynx, chest and abdomen reveals no other lymph nodes or organs affected. I can go on all day without getting tired if I want and perhaps, that’s because of the many who are fighting for my cause. When the doctor was explaining about my cancer, I felt like c’mon! There’s nothing too hard for the King. I remember reading somewhere before that faith is a verb. Indeed, it is.

I learned how blessed I am to have cancer ONLY and I hope that there can be something done to improve the blood donation process in the country..

"If you remain in me and my words remain in you, ask whatever you wish, and it will be given you" -John 15:7

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