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TERRIFIED to undergo auto stem cell transplant!!!!!!

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

I am a 28-year-old wife/mother. I was diagnosed over a year ago with a form of Non-Hodgkins Lymphoma. I underwent CHOP chemo and was in remission for one year. I was just told it I have a recurrence and need to have an autologous stem cell transplant! This gives me only a 50% chance of a cure. I am so scared!! I just want to be a normal mother! Please help..thank you. Natalie

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Oh Natalie,

I wish I could help you some way. I do remember the feeling of being told of a HD recurrence when I had a 6 month old and later Breast Cancer when my girls were 11 and 14. My very best friend has had 2 autologous stem cell transplants for multiple myeloma, she 3 children. It is so terrifying, but as the days go on, we do what we have to do and eventually, things return to "normal". I know this prpbably doesn't help, but I do feel for you and wish you the best, from one Mom to another.

jerzpilot's picture
jerzpilot
Posts: 39
Joined: Nov 2009

Hello Natalie,

Sorry to hear about your recurrence, at what stage was you diagnosed in? I will keep you in my prayers. I am at stage 4 with FNHL, and will start R-CHOP within the next month. Please keep us posted. Best wishes to you and your family.

Edwin.

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Hi Cathy,
How did your friend do during her transplants? Its very scary. Thank you for sharing, Natalie

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

My friend made it through her transplants w/little problems. She also had to contend w/dialysis as the MM made her kidneys fail. I think it was remarkable that going through one transplant, she was still able to face doing the second. Having children to go home to made her more determined and stronger in her will to fight. I remember her saying she slept quite a bit of the time at first and did get stronger every day.
All my best wishes to you and your family. Thinking of you.
Cathy

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009
SusanFedorka
Posts: 2
Joined: Mar 2010

Hi, I had a full allo in May of last year for ALCL, very aggressive & in the bone. I am doing very well. It is very scary, but it is do-able. There is an elist link you will find on this website (link below), where many members (all w/NHL) have had sct's and some have kept journals you can read. It is a great list of wonderful support and information
http://www.nhlcyberfamily.org/
Best wishes,
Susan

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Thank you Susan for your reply. Firstly, I am glad you are doing well ..congratulations! I went to the website you posted and could not sct patients. You said your transplant was scary, how so? Thank you for sharing, Natalie

whatdoyousay
Posts: 15
Joined: Nov 2009

Hi Natalie, My sister had a stem cell transplant, and I was her donor. She HAD both hodgkins and Non Hodgkins Lymphoma, or what they call grey zone lymphoma, very rare. It was in her bones, and they gave her 30% chance of getting rid of the cancer, but she did it, and was able to get a transplant. She is at day 40+, and is doing really, really well(maybe home by day 60.) She is 33, so young as well. It is not an easy journey, but it is one that you can get through. There are scary moments, when you question every headache, nausea, blood work....... She had to do blast chemo before transplant, which was very harsh. The road after the chemo, then transplant is not easy, but slowly gets better. YOU CAN DO THIS!!!! She has a 9 month old baby, and is determined to get home to her as soon as possible. The transplant was a complete success, and she has no evidence of cancer at all!! Please know that there are so many here, on this website and chat room who can help you get through this. I hope and pray for your strength and courage in your fight. Aimee

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Was your sister in for 60 days because of a donor transplant? Thank you for your story! Natalie

whatdoyousay
Posts: 15
Joined: Nov 2009

Natalie, she did have a donor transplant, I was her donor, and it was no biggie for me. Just kind of a strange and unique experience. I have heard that after chemo and your body has been worn down, it may take a little time to collect enough cells, but I saw many donors also take a few more days to collect enough cells. You have youth on your side, you should do well. I should've said we do not live where they do allo. transplants, so we had to go to MD. Anderson(4 hours from home.). They have a rule that after transplant, once you are released from the hospital, you can't be more than 30 minutes away from the hospital. Initially they said she would be there for 100 days. We quickly realized they give "worst case scenario," and if her renal function is good, she will be released MONDAY!!! Day 59. I know with auto.transplants the protocol is different on timing, due to no risk of rejection(or is there a small risk?.) Also, so many of the anti-rejection drugs have such bad side effects. They had to monitor her closely once the transplant had taken place.

This is a really scary process, so much unknown. It is so normal to feel afraid. You have 3 little ones to fight for, and they will keep you going. I hope you are surrounded by people who can support and care for you with love during this time. Those of us here, on this website, will be here too. You are always welcome to send me a message. It helps so much to have people who understand, and have been through it. I may not have had a transplant, but I have been there every step of the way. Aimee

Mommazoid's picture
Mommazoid
Posts: 3
Joined: Mar 2010

Natalie, my sister, who is 38, had an auto stem cell transplant in December of 2009. Like you she was in remission for about a year when her Hodgkins Lymphoma resurfaced. The actual collection of the stem cells from your blood is not so tough. However, my sister had trouble collecting enough through her blood so they got the balance from her bone marrow. She had a six day intensive chemo to wipe out her immune system in the hospital prior to the transplant. That was hard but they are good about medicating you through the discomfort. The day of the transplant, i.e. her new "birthday" was very uneventful. You will probably sleep through most of it. The bags with your stem cells are warmed right in your room in a bath of water. It looks like a bag of blood on an I.V. going to your catheter My sister has absolutely no memory of it at all. She was pretty out of it. She spent about a month in the hospital. There were some tough days but you will be surprised how quickly you are walking around. My best advice to you is to eat as much as you can. My sister, a vegetarian, had a hard time with the food and I really think it delayed her recovery. They ended up feeding her through an IV (looked like a bag of mashed potatoes!) for awhile. They also let me bring her meals that I had cooked at home. She just had to eat them within 48 hours. I imagine the Unit at your hospital with have a room with a fridge that family can put labeled food in. So hang in there Girl! It will go well. This is a great shot at a second chance for you. When is the big day? I will send a prayer and good mojo your way.

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Thankyou for your story! Did she have trouble with fevers/infections? How long until she could start resuming some normalcy? I am scared to be in the hospital for 3 weeks and then a hspital for 2 weeks (I have school-aged children), but hopefully it will go quickly. They gave me a 50/50 chance of this curing me, and honesty it saddens me at times, knowing I have three babies at home. Was any part painful for your sister or did she vomit alot from anything? Thank you! Natalie

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Natalie, I am so sorry you on on this journey at such a young age. Please remember as I have been told that your case is unique. You might have no problems at all. The hospital will be right on this. You are young and you have a beautiful daughter to go home to. If the hospital says you are a candidate , trust them. The time will go fast especially for you as you will be sleeping a lot. God bless you. I'm 62 and I honestly hate that you are going through this. I had NHL(foliicular ) I pray constantly and give God thanks for everything. I even thank him that I can go to work and face my 20 fifth graders!!!!

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Joanie,
I really thankyou so much for your uplifting response. Have you gone through a BMT? You are right, I have a beautiful daughter to go home too...as well as two little handsome boys!! Statistics are given out, but it's ultimately up to our Lord. Three weeks in the hospital scare me, and then two weeks after in a hotel because I have school-aged children is just heart-wrenching. Hopefully I will sleep through most of it! Afterall....I am doing this for my little angels! PLease keep in touch and many blessings to you! Natalie

Mommazoid's picture
Mommazoid
Posts: 3
Joined: Mar 2010

Natalie, it is definitely hard to hear cold numbers like 50/50. My sister was also given odds similar to yours. The thing to remember is YOU CAN be one of the 50% that make it. You are just going to have to go through this process, get a support system (friends and family) to help out. It's going to take some time before your energy levels and counts move up. Hang in there!

711tom
Posts: 44
Joined: Mar 2010

sorry to hear of your recurrence as I have had that discussion myself. I was DX in 1993 with stage 4 FNHL. I have had CHOP, Bendamustine-R and in 08 did a new version of CHOP. I had a scan yesterday and my ONC is recommending a BMT. I am also scarred to dealth. He said while he could treat me in other ways, this has a really good chance of giving me a long-term remission. I will be 52 in April and I am torn on what to do. When do they want you to have the BMT?

natalie14's picture
natalie14
Posts: 36
Joined: Mar 2010

Right now I am prepping to have the BMT which will be sometime in early June maybe July. Currently I have just completed my first cycle of ICE and will be going probably (depending on my levels), for my second round of ICE next week. I am amazed and how well I bounced back after ICE. After my second round of ICE they will give me scans to see if it has put me into remission. Then the work-up stage will start, placing the port, harvesting cells, etc. The final and most dreaded stage is the in-patient 3-week stay for the actual transplant/high dose-chemo/total body radiation. After the 3-week stay, I have to stay at a nearby hotel for 2 weeks to let my blood levels get higher since I have school-aged at home. I have somewhat began to wrap my mind around this whole thing, but it honestly does scare me. What we have to remember, is that we are going for a CURE! Not sure statistics he gave you on the transplant being successful, but either way we are blessed to have that option! Long-term remission or cure, both are every reason to dive into this and fight. Putting things into perspective is important. Weeks of chemo, doctor's appointments and then a month for the procedure, then a few months to build yourself back up is really only a short amount of time out of our lives. I wish you the best of luck and prayer is the best tool for guidance and support....this site is amazing as well. Please keep me updated! Blessings, Natalie

711tom
Posts: 44
Joined: Mar 2010

I am reawlly happy that you are bouncing back well from the ICE. Also sounds like you are putting on your figthing gloves to take on the BMT. You are right about the time not being long in the scheme of things especially when you look back on how fast it all happens. I admire your strength and courage and I wish you the best. Please keep me updated as I am leaning toward the BMT in the fall. My ONC told me i was in no immediate danger but needed to start thinking about some treatment. He is doing some research with his colleagues to help me decide between BMT or possible Zevalin. keep up the fight and I will pray that God looks over you.

711tom
Posts: 44
Joined: Mar 2010

I am reawlly happy that you are bouncing back well from the ICE. Also sounds like you are putting on your figthing gloves to take on the BMT. You are right about the time not being long in the scheme of things especially when you look back on how fast it all happens. I admire your strength and courage and I wish you the best. Please keep me updated as I am leaning toward the BMT in the fall. My ONC told me i was in no immediate danger but needed to start thinking about some treatment. He is doing some research with his colleagues to help me decide between BMT or possible Zevalin. keep up the fight and I will pray that God looks over you.

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

Natalie, when is your transplant? I want to pray for you a lot on that day. I know you will be fine. I never had one but you have that beautiful daughter and boys who will be wating for you to come home. Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and HE will direct your path. Love and prayers Joanie

ocbeach56
Posts: 7
Joined: Apr 2010

Hi Natalie,

I had an allo transplant in June of 2004 and it was not a walk in part but it bets having to face cancer over and over again for the rest of my life.

It is interesting that your cancer give your only a 50% chance of a remedy. Maybe because it is an auto transplant. Inquiry with your doctor about an allogenic transplant. There is a greater chance of graft vs host disease an allo but it may improve your long term outlook.

I hope and pray you have continue to enjoy defeating cancer with your family.

carrie_b
Posts: 5
Joined: Aug 2009

Hi Natalie,
just wanted to know how you are doing, if you have a final date for your SCT to begin. I am now day 37 of my auto SCT and it went really well for me. I was gone from home for a total of one month...the week before my 'birthday' with the treatment and then 3 weeks following. I just had my discharge appts last week. I was in the hospital for one week total. On day 4, I had a fever and they admitted me and treated me with antibiotics. I only had nausea a few times because I was really good at preventing it with the meds they prescribe. All in all, I only threw up three times and it wasn't bad! I did have mucositis but it was really only bad for 3 days and it seemed quite manageable. I am still getting my taste buds back and am tired alot, but over all I was surprised just how doable the whole things was. I know it is different for everyone.

The worst part was being away from my family but it was also very reassuring when I saw what happened when I was away....they were fine! I have two teenage daughters with very busy schedules and my father stepped in to help my husband pick them up from activities and take them places. Our wonderful church family delivered food. My husband was relaxed and did above and beyond in caring for them. My worries were unfounded and I love knowing that although they missed me, they were well taken care of.

Hope to hear about your journey soon!
Carrie

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Natilie, what type of nhl were you diagnosed with? this make a determination for stem cell. john

DennisR
Posts: 148
Joined: Sep 2009

Hi Natalie,

I had an Autologous Stem Cell Transplant in Feb,2009 for a recurring NHL cancer after 8 years. I also had surgery and an R-CHOP regimen for 6 months. Everything was fine until the recurrance and, like you, I was informed that once the NHL recurs after the R_CHOP treatment the odds are that it will continue to recur with even shorter intervals between episodes. Hence, I opted to do the Stem Cell Transplant which gave me similar odds to those you have been given.
I am a 68 year old male, well past the cut off age for receiving a transplant, however I surprised all the Doctors and recovered very rapidly, though I must admit, it was a very frightening and difficult experience and I very nearly backed out of the treatment altogether and just went home.
It's been a little over a year now since the transplant and I'm doing very good, there's no evidence of any more cancer and I'm rapidly regaining my strength and stamina....amusingly enough, my hair all grew back dark brown, like it was when I was your age, and is still dark brown today. I was nearly all grey when I began the treatment.
I understand your fear and anxiety regarding the treansplant, but given your age, and the type of cancer you have, I would personally recommend that you undergo the treatment since it will give you the best odds of defeating your disease. I know two other patients that had NHL, and did the transplant at the same time as I did, we all survived and are doing well, I keep in contact with them and compare our progress.
I'll keep you in my prayers, (this is very important during times like these), and pray that you make the best decision for yourself, your family, and your friends.
Please keep us informed, and if you hqave any questions, please contact me, either here or through private messaging.
DennisR

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