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Gina H
Posts: 7
Joined: Nov 2013

Hi everyone. I have been reading a lot of the posts on here for the last few days. I was diagnosed in September 2009 with Diffuse B cell NHL. I went in for rutine surgery to remove my ovaries and woke from surgery cut from hip to hip instead of the four one inch incisions that I was expecting. They had found that one of my ovaries was 14 cm and the other was 3 cm. The lynphoma had completely taken over my ovaries and there was no ovarian tissue left. It was all large B cell lymphoma. After CT and Pet scans thet found involvolment in my hip and in my abdomen behind my heart. They also did a bone marrow biopsy and there was involvement there. I was in stage IV. My first thoughts were of my family. I have been married 38 years and we have four grown children and 12 grandchildren. I received four rounds of R-CHOP with the Neulasta shot the following day. After the chemo I was in remission in February . During my treatment I was also taking a study drug called Enzataurin. In October they thought there had been some growth in the spot beHind my heart after a CT scan. He ordered a PET scan and a needle biopsy of the node behind my heart which had to be done under a CT scan with me awake. They both came back good and I was still in remission. I had another scare the following year that turned out to be fine also. I went in June for another CT scan and he was concerned about a node in my groin area. He had me come back in three months to check for growth. This scan showed another gland on the other side that had conciderable growth. He ordered a PET scan and a few places lit up. He sent me to a surgeon to do a biopsy on the node but the surgeon was afraid to do it because it was in an extremely venous area. So he did the biopsy on the one on the other side. It came back possitive for Follicular Lymphoma. After that he sent me for a needle biopsy on the larger node which had to be done under a CT scan because of the area it was in. He also did a bone marrow biopsy at the same time. He was unable to get enough of the node for a conclosive result, but the marrow was clear. He is sending me to Vanderbilt Ingram Cancer Center on Monday to speak with a doctor about Stem cell or bone marrow teansplant. I am absolutely terrified. My husband and my children all do not want to talk about it and I just don't have anyone else but the Lord to talk to. Any info would be greatly appreciated. 

Shoopy
Posts: 210
Joined: Jul 2013

You have come to the right place.  There are a few people here who have gone through a relapse and/or a stem cell transplant (SCT). 

I have a very aggressive, chemo resistant form for diffused large B cell lymphoma.  It was stage IV-B with no mass and no bone marrow involvement.  I am 48yo, married male with 3 children.  I have completed 2 rounds of R-CHOP, 3 rounds of R-DHAC, and 2 rounds of R-ICE.  As of today, I am getting ready for stem cell collection next week and admission to the Roswell Park Cancer Institute Bone Marrow Unit before Thanksgiving for an auto-stem cell transplant.  Honestly, I am not afraid of it...in fact...I can't wait to get in there.

The doctors tell me...and I felt this way myself...if I don't go through the STC, the lypmphoma will most certainly return in a couple years or less.  I know it will be the most physically and mentally demanding thing I've ever done...but I also feel this will help cure this beast.

Having a SCT is not a simple decision.  I recommend you get as much information as you can.  I can also recommend you contact the Leukemia and Lymphoma Society--they have a program called "First Contact" (or something like that).  They will put you in contact with someone who has gone through what you're facing.  I have someone that I talk with...even though my family is extremely supportive...because unless you've dealt with cancer...I don't know if you can understand what it's like.

I'm sure others will chime in with more great advice.

I pray that God gives you strength and support.  Keep us in the loop.

Karl

Gina H
Posts: 7
Joined: Nov 2013

Thank you Karl for your response to my post, and even moreso for your prayers. That is one thing we can never get too much of. I pray everything goes well with your SCT.

Gina 

Cerato
Posts: 18
Joined: Nov 2013

Hi Gina,

So glad that you are here.  I am very new here myself but have found this community to be warm, welcoming and very knowledgeable.  

I had a stem cell transplant in July 2012.  I have a rare and very aggressive form of DLBCL called Double Hit.  I had 6 rounds of R-POCH, which put me into remission, and then a couple of months later I went in for an auto STC.  "Auto" meaning, autologous, which means that they used my stem cells rather than someone else's cells for the transplant.  I was very anxious about the whole thing for a while, and wondered why, if I was in remission I should have an STC.  I was told that it was to consolidate the gains made by the chemo by doing everything possible to rid my body of every last cancer cell, and to ensure that my remission lasted as long as possible.  Those answers sounded good to me, and once I decided that I would go through with it, my anxiety pretty much disappeared.

To tell you the truth, I more or less breezed through the transplant. I didn't have any reactions other than fatigue, to the chemo prior to the transplant itself, and the transplant itself was quite anti-climactic -- about 20 minutes for the infusion of the stems cells.  I think I said, that's it?!  After the STC, I was in hospital for 2 weeks where the docs and nurses watched me like hawks for any signs of infection.  I had pleurisy for about three days and I had 2 blood infections which the docs were on within minutes, because as soon as my temp went anywhere near 38 degrees celsius, they were all over me.   I slept through my 2 day bouts with the blood infections, which the docs made go away with antibiotics.  I don't want to be too breezy about this because I know that it's a risky procedure, and that there are different challenges for everyone, but my experience with it, at 54 years old, was that it was much easier than I thought it would be.  Near the end of my stay, fatigue and boredom with the routine were what I was feeling.  I had heard that I was going to feel like I'd been "hit by a truck" afterward, but that never happened.  It's been 4 months since the transplant and I haven't had any infections.

 I felt good after the transplant - tired, but happy to be done with it all - and after 8 weeks of rest started back with many of my regular routines including relaxed/very part time work.  Well that was just silly, and I had to stop almost all of my activities for a month because I was just exhausted.  Two months is not nearly enough time to let the immune system build up.  After another months rest I felt/feel my energy returning, but I'm not going to jump into everything the way I did last time.  So I continue to take it easy on myself.

I hope hearing about my experience with a STC is of some use or comfort to you, Gina.  I send you my best and warmest wishes and I will follow this thread and others with your name on them to hear how you and your family are doing.

Take good care.

 

Gina H
Posts: 7
Joined: Nov 2013

Hi Cerato,

First of all I would like to thank you so very much for your words of encouragement. Hear about your experience has helped to calm some of my anxiety.It sounds like we have got a lot of things in common as far as our cancers go. I have not heard my doctor say anything about "Double Hit" but he has told me me that my DLBCL is very aggressive. I have read that the tumor growth is so fast that it can double in size in as little as 24 hours.

I am also turned 54 in August. I was diagnosed exactly one month and one day after my 50th birthday. On my granddaughter's birthday. She was only six at the time and I will never let her know that.

I also will be able to donate my own cells for the transplant. I have read that it is so much easier that way. I am so glad that you had such a symptomless recovery. There is a lot of information on the web that can literally scare you to death. That is why I am so thankful to have found this disscussion board. I am now able to meet people who actually understand what the battle against this beast is all about. My friends and family are so afraid to say something that may upset me that I really can't talk to them about how this is making me feel.

I am so happy that you replied to my post. You really have eased my mind a little. I hope that things continue to go well on your recovery and will keep you in my prayers. You really have been a blessing to me tonight a pray that God will continue to bless you as you go through the healing of this transplant. If there are any questions that you have that I can possibly help you with please let me know.

So blessed to have met you.

Gina

Gina H
Posts: 7
Joined: Nov 2013

Hi Cerato,

First of all I would like to thank you so very much for your words of encouragement. Hear about your experience has helped to calm some of my anxiety.It sounds like we have got a lot of things in common as far as our cancers go. I have not heard my doctor say anything about "Double Hit" but he has told me me that my DLBCL is very aggressive. I have read that the tumor growth is so fast that it can double in size in as little as 24 hours.

I am also turned 54 in August. I was diagnosed exactly one month and one day after my 50th birthday. On my granddaughter's birthday. She was only six at the time and I will never let her know that.

I also will be able to donate my own cells for the transplant. I have read that it is so much easier that way. I am so glad that you had such a symptomless recovery. There is a lot of information on the web that can literally scare you to death. That is why I am so thankful to have found this disscussion board. I am now able to meet people who actually understand what the battle against this beast is all about. My friends and family are so afraid to say something that may upset me that I really can't talk to them about how this is making me feel.

I am so happy that you replied to my post. You really have eased my mind a little. I hope that things continue to go well on your recovery and will keep you in my prayers. You really have been a blessing to me tonight a pray that God will continue to bless you as you go through the healing of this transplant. If there are any questions that you have that I can possibly help you with please let me know.

So blessed to have met you.

Gina

Rocquie's picture
Rocquie
Posts: 496
Joined: Mar 2013

I believe you have found the right place for comfort, Gina. You have really had a time with your Lymphoma! I am so sorry to hear that your husband and children don't want to talk about Bone Marrow Transplant with you. And I understand your being terrified.

About half way through my treatment, my Lymphoma was beginning to show signs of relapse--and I wasn't even in remission yet. My Doctor referred me to the Bone Marrow Transplant Center at Duke University. As my appointment time neared, my thinking and emotions degraded. I think I understand when you talk about being frightned. I also found it extremely difficult to talk about.

I went for the appointment. The transplant physician did not think I was a candidate at that time. But I am very thankful for that appointment. The people I saw that day, from check in, to the insurance specialist, to the nurses and technicians, the social worker, the physician's assistant, and the doctor, were outstanding in every way.

I came away no longer fearing SCT if it is in my future. Knowledge really is power.

Prayers and hugs,

Rocquie

Gina H
Posts: 7
Joined: Nov 2013

Went for my appointment at Vanderbilt today. The doctor was not as encouraging as I was hoping for. He seems to think that my diffuse B cell Lymphoma was a result of Follicular Lymphoma that had progressed to Large B cell Lymphoma. I was hoping to be able to be my own donor for the transplant but he believes that the transplant with another donor would be more beneficial for this type of Lymphoma. I do have 5 siblings who are all ready to donate if need be. The problem is one of my sisters is an alcoholic who drinks daily, my other sister's boyfiend has Hep C, and two of my brothers have experimented with drugs over the years. My other brother who is like myself and does not drink or take drugs had a heart attack last December. I came away from my appointed just crushed. I broke down in the truck on the way home. I feel so defeated. This doctor is going to disscuss my case with his team on Monday to try to decide the best way to go about this. So it is hurry up and wait for another week. Has anyone on here dealt with Follicular Lymphoma? From what I understood from the doctor it is not as aggressive as the Large Diffuse B Cell but is harder to treat. Any feedback would be greatly appreciated. 

Gina H
Posts: 7
Joined: Nov 2013

Rocquie, thank you so much for your encouraging words. It sounds like you too have been through a tough time with your Lymphoma also. I will keep you as well as everyone in my prayers. I pray that they will get yours in remission soon. This thing just seems to consume your whole life. It is the first thing I think about when I open my eyes in the morning, and can't fall asleep at night thinking about it. We just have to have faith and fight evry step of the way.

 

Prayers and hugs to you too

Gina

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