Recurrent HL

ceelavee

Hello, everybody!  

I first was diagnosed with classic HL in 2011, 2A with a mass in the right supraclavicular node, and another mediastinal mass.  I must have joined this network then, because my email was registered when I went to "join" tonight.  I just don't remember posting here.  I think I read a lot, but didn't feel I had much to contribute.

I went through 4 courses (8 total treatments) of ABVD in 2011, from May through Mid-August.  PET scan after the last chemo was clear.

In September, 2011, I had a total of 4 zaps of radiation before I developed pericardits, and had to stop.  In November, after recovering somewhat from the pericarditis, and getting a second opinion about this - it was decided that I would not have any further radiation treatment.

In February of 2012, after a 6 month CT scan, I was found to have pleural effusion in both lungs (and I HAD wondered why I was still short of breath).  There was enough in the right lung to have it drained (thoracentsis).  The fluid was found not to contain cancer cells - big relief.

In the meantime, actually in December of 2011, my husband was diagnosed with stage IV bladder cancer, and started treatment, had lots of complications.  He had seen me through HL and chemo (I had a lot of pain and whatnot), and now I could see him through his treatments.  I am so grateful that I had chemo before him - it really helped me to understand what he was going through, emotionally and physically. 

Doug fought the bladder cancer until he went into the arms of God and angels on 3/17/2013.   I still cry, am crying now.  My best friend, the love of my life.  My superman.  I had promised to love him all the way through the door when it was time, and God granted me the gift of being with him through it all.  We loved/love each other - twin flames and soul mates. 

I spent most of the rest of 2013 just existing.  I had inflammation in the old HL tumor site near my right collarbone (supraclavicular node), but I'd had enough of hospitals and doctors, and I was lost without Doug.  I did nothing.  I just didn't care.  I ate too much, drank too much, vegetated, hugged my dog and cat.

Finally, I started meeting with a therapist for grief counseling in the fall of 2013, which helped.  In Januray, 2014, I went to see my oncologist, and after tests, and surgery on the old tumor site in March, I was diagnosed with recurrent Hodgkin's Lymphoma.

So this time around I will be receiving ICE, then radiation, then stem cell transplant.  All this will start in mid-July.  The reason for the delay is that HL has returned to ONLY the area near my neck, and it's not in the lymph nodes but in the subcutaneous tissue near my collarbone (which Dr. Takvorian has said is VERY unusual), and I am lucky that there is no need to rush.  My sister can't come to help until late July, and I live alone and so I'm lucky and blessed she'll be able to come out.  What an angel she is - and she's an RN!

Long post, and I hope nobody got bored! I just want to introduce myself, and I hope I can contribute in some way to this forum, and I know I'll learn and receive a lot from all the other survivors here!  

(((Hugs)))

 

 

 

Rocquie

Welcome

Welcome to the group, Ceelavee. I hope you will find comfort and support here. You have been through so much and I am so very sorry to hear about the loss of your beloved Doug. I am so thankful you have a sister who is an RN and can be with you for your stem cell transplant. 

We have a few active members with HL and I'm sure you will hear from them. (I, personally, have Non-Hodgkin). We also have some members in various stages of receiving SCT so I hope you will find support there. 

Your journey has been long and painful. But it has led you here. I pray you find some comfort with us. I think you will.

Many hugs to you,

Rocquie

 

illead

Rocquie said:

Welcome

Welcome to the group, Ceelavee. I hope you will find comfort and support here. You have been through so much and I am so very sorry to hear about the loss of your beloved Doug. I am so thankful you have a sister who is an RN and can be with you for your stem cell transplant. 

We have a few active members with HL and I'm sure you will hear from them. (I, personally, have Non-Hodgkin). We also have some members in various stages of receiving SCT so I hope you will find support there. 

Your journey has been long and painful. But it has led you here. I pray you find some comfort with us. I think you will.

Many hugs to you,

Rocquie

 

Hi Ceelavee

I just want to welcome you also.  My husband has Mantle Cell Lymphoma so I cannot be of too much help.  As Roquie said though there are others who have or are going through an SCT so hopefully they will be sharing.  I am so sorry for the loss of your husband.  I almost lost Bill when he was first diagnosed so I know the desperation and fear and loneliness at just facing the possibility, I cannot imagine what you have actually gone through plus all the things that have and are happening to you.  It sounds like you are getting stronger and I hope you will find some comfort and support from us.  We are all just ordinary folks but we care about one another.  So again welcome to the group and we hope the best for you and that you will get past your SCT and on with your life.  Don't hesitate to use us as a sounding board if you want to cry, laugh. vent or whatever.

Best to you, Becky

Max Former Hodgkins Stage 3

Terrible

cee,

Sorry for the terrible sequence of events you have been going through. Because I asked about it years ago, I was told that if I relapsed my second-line therapy would be exactly what you are scheduled for -- the ICE and then SCT.  Although it is harsh, I have heard that the pre-SCT ICE treatments do not take very long. 

I also did abvd (6 cycles, 12 infusions). It is a weird conincidence, but the Bleomycin causes lung problems in 10% of all users (I am still getting figured out by a plumonologist).  But, Bleomycin is also used to TREAT pleural effusion. Just struck me as backward, somehow, that you received Bleomycin and then GOT pleural effusion, even if it was a long time later.

Hopefully your relapse is just one of the more indolent forms of HL showing its ugly self again, since SCT usually eradicates them for good.  I also had a very indolent form of HL, but a very rare one.  Thankfully, it has not reoccured for five years now.

Bless your treatment, and bless the memory of your husband. That was such a description you gave of your relationship.....

max

jimwins

Welcome

My apololgies for posting late.   You have been through a lot and I'm glad you decided to post here.  I can't add a whole lot to what others have said except to reiterate with a warm welcome.  Please feel free to chat here with us.  Grief is a hard process (believe me I know) but you are not alone.

I'm glad your sister is going to be with you in July .  Several people here have had SCT or are going through them so you won't be alone with that.  Big big hugs to you!

Jim

 

 

Jeff148

Wow

Your story brought tears to my eyes. So sorry you are going through this! You are blessed to have a wonderful sister. Stay strong!!

Jeff