I'm Having a Stem Cell Transplant

I need to make this post sort of brief. I'll post again as soon as I can.

It turns out that radiation is not going to be enough. My situation is worse than that, and, as my oncologist said to me today, "You will only have this chance to get this right." The relapse is bit worse than I'd thought, and the "curative" approach now -- that is, if I want to be cured once and for all -- is to have a Stem Cell Transplant.

My oncologist consulted on my case with Dr. James Armitage, one of the leading lymphoma experts in the U.S., as I was sitting right there. Dr. Armitage said definitively, after hearing my history, that an SCT (stem cell transplant) was my only hope for a cure. Everything hinges on the second course of treatment, when the first has not effectively done the trick. In my case, I responded beautifully to ABVD chemo, handling treatment quite nicely and, for a Stage IIIB patient, reacting ideally, achieving complete remission after 3 of 6 cycles. (3 of 6 months, that is.) I was still in complete remission after chemo's end. Hooray!

At my very next scan, however, at the end of November, and less than 6 months out of treatment, I had a positive PET. One node in my chest lit up a bit (not drastically, but still a bit) and it was 1 cm. Same thing happened at the end of January. Then a CT scan (my first since my diagnosis - shame on my Baltimore oncologist!) supported the PET scan results in early February.

Now, in June, I have one mass of 3.6 x 3.9 cm which extends from the outside of my right clavicle to beneath it and reaches down into my upper chest. It registered a 15.5 SUV (standard uptake value,) on the PET, when normal would be more like a 2. There are also numerous tiny nodes appearing throughout my chest. The radiologist says that they are "insignificant" now, but damned if they were absent in January. I'm not "bulky," meaning that I do not have a mass of 10 cm or larger -- I never did -- but my disease has always been present most in my chest. Hodgkins differs from Non-Hodgkins in its progression through the body, among other things. Hodgkins -- hereon to be referred to as "The Hodge" -- typically travels in a methodical, predictable pattern from north to south. So my neck got all gopped up with the shit (I ended up with a malignant necklace, thank you very much) before it moved into my chest, a larger area. Like I said, I did not develop "bulky" disease, so I just had lots of smaller masses, and then it moved further south into my abdomen and pelvis, where I had a couple of small masses. I recall being COMPLETELY freaked out to discover that I could feel one in my lower groin, just left of my own little slice of nirvana. Holy crap, was THAT disconcerting!

Right now I'm looking at recurrent disease in my neck and chest....and a Stem Cell Transplant to hopefully put an end to it entirely. The hair will be gone, nails/toenails likely to follow, mouth sores and shingles, debilitating constipation, lotsa crazy nausea, loss of appetite (and therein lies the silver lining! ABVD almost always results in weight gain from the steroids -- but ICE makes you drop a bunch! Woo hoo! Like a spell at the spa, I'd say.) There's more, but I'd hate to spoil the surprise.....gotta keep up that readership.

I sound flippant. I'm really not. I feel afraid, worried, guilty, and resigned all at once. I'm just trying to hold onto some sense of optimism and my own personality while I sacrifice my body to this experience.

It sucks like holy hell, but I am left without any choice. It's just a real sonofabitch, really. Ooh! Cursing! I keep threatening Lorraine that I'm going to start cursing like a sailor now, and every other word is going to be the F word. But that's not bloody likely, really. ;)

The Day Before the New Oncologist Visit to Discuss Relapse

I just posted this on the Hodgkins board that's been my lifeline, and I just posted this update there in response to a supportive call-out on my present state.

Aw, Judy, you're a real pal for posting this. I'm ok. Doing much better physically, still having mini meltdowns emotionally. I'm still vacillating between sadness and anxiety over my ongoing state of health -- and life! -- and anger and resentment over this relapse's intrusion and disruption of my life together with Lorraine. We've just entered Chapter Two in a new state, in our new beautiful dream home (with its accompanying larger mortgage,) with me still on COBRA and with a shitty job with shitty pay. Facing upcoming treatment for a relapse, it's simply terrifying. Looking in the eyes of my pets earlier, and the face of sleeping Lorraine just now, I am so afraid of not beating this. I can't leave her with this mortgage and the care of 8 pets, and all alone without me in a state far away from her family. We really love one another.

I hate to be this big melodramatic drama queen -- but if I can't let my guard down and show my fear here, then where can I?

I wish that I'd heard some results from my onc today, because I sure as heck would hate to get the definitive word from him tomorrow at our appointment to discuss relapse treatment. I'd rather get the final word over the phone, as I did from him before the biopsy. I was calm self-contained, and pragmatic.....and after we hung up, I was able to react to the news freely, in (and in the backyard of) my own home.

I know it's not the end of the world, but I'll be damned if I don't feel as if I'm in great peril. It's doable, I know that. It's localized and therefore easier to to target with focused purpose. I am absolutely up for the fight. I have no choice. I just hate that I'm in this position again. I keep reminding myself that I am one of many, and that very often the second time's the charm....and sometimes that bolsters me and sometimes it just makes me sad or angry.

I'm sharing here more than I've shared with anyone. I thank you for that ability.

And thank you, Judy, for reaching out to me. You're incredibly supportive -- across board lines -- and I sincerely appreciate it.

Thanks for letting me vent, everybody. The bruises are still purple, but they're not the only evidence of pain, as you all well know, regretably.

I'll update again once I know more. *insert woogly/wobbly-faced smiley here*

The Day After the Biopsy

Alright, so it's done. I ended up having a core biopsy (and two fine needle aspirations, just for kicks -- the radiologist said they'd be good to show "flow" I think.) What started out as a mediastinoscopy became a CT-guided biopsy once they saw that puppy sticking out over my clavicle, and then the CT-guiding became ultrasound-guiding instead. So that's what I had. I have real concerns about the core biopsy's adequacy in identifying HD, and voiced that to my onc via email. The following explains it in greater detail:

Core biopsies are usually inadequate to diagnose properly and classify Hodgkin's lymphoma. It is usually much more accurate and informative to have an open biopsy (also called a surgical biopsy), in which an entire abnormal lymph node is removed. This procedure can usually be done under local anesthesia, but a general (whole body) anesthetic may sometimes be needed and a few stitches are often required.

In response to my emailed concern, my onc replied, "Principle: Do least for most gain. If the biopsy is + we have saved larger intervention. If negative - out it comes." He will try to expedite the results and we'll take it from there.

Finding a vein was a major ordeal -- it took over an hour of rooting around -- in addition to the hematoma on my neck from the biopsy, I have 3 on my arms from all of the efforts! Large purple mounds. I had a port for chemo, but all of my blood draws had to be taken from my arms per my insurance, so now it's really hard to get anything at all. It was at this point that Lorraine broke down; I think I referred to "battle scars" when the nurse told me a couple of sites were going to bruise badly, and that was sort of the breaking point for her, the poor sweetie. Another point was when I felt a little nauseous from the saline taste and its reminder of chemo. It just really hurts her to see me going through any of this, and she's a bit of a control freak, so feeling helpless to protect me or fix this makes it all the more difficult and painful for her.

Yesterday was a little rough....especially since I'm so concerned that we're not going to get the results we need from the day's efforts. I saw the sample from the core biopsy, and it seemed sort of big -- and the radiologist said that she really felt we'd gotten what we needed. The fine needle biopsy she did just because she could -- and also she said it was good for the "flow" mentioned above. (At least that's what I think she said.)

With the core samples (she got two,) I asked about their efficacy in securing any Reed-Sternberg cells, and she said that they get a sort of column of cells, so the Reed-Sternberg cells have room to be taken in also. But all of my prior reading, and the conversations I'd had pre-biopsy last year with my surgeon and post-biopsy with my Baltimore oncologist tell a different story.

Anyway, this part is done. I'm really hoping I don't have to go back in -- but if I do, while the additional scar to remove this honker on my neck would be most unwelcome, I would be thrilled to get it cut out since it IS the single localized point of relapse, and then radiate the surrounding area(s) to the extent the radiation oncologist found necessary.

I have an appointment with my oncologist on Thursday, and another with a local radiation oncologist this Monday.

So things are moving along.

Update!

Wow! I was so surprised to come back here and see all the responses! You guys are amazing, and I thank you from the bottom of my heart.

Great news! My onc misspoke!! My mass isn't 3 1/2 inches -- it's 3 1/2 centimeters! I am completely positive that that's what he told me on the phone, because I had a hard time getting past that when he was talking to me. Also, I found it curious that he'd speak in inches instead of centimeters, but chalked it up to his, being South African, desire to speak in terms more readily understandable to an American. Anyway, his office faxed to me today the radiologist's report, and I was so happy to see that it's not almost 9 cm, but instead a 3.6 x 3.9 "large supraclavical mass." It's in my lower neck, upper chest. I was hoping it was just in the chest, so maybe I could get away without radiation to my neck, but now I know that's not going to happen.

I'm just happy that it's not as aggressive as I'd thought, and that I might be able to get away with a bit less radiation than would have been necessary for a 9 cm mass.

I'm feeling fragile and worried, but pretty positive overall. While I responded beautifully to chemo I couldn't hold onto my remission, so things didn't go according to plan. There are plenty of folks who have to fight more than one battle in order to win the war, so I don't feel singled out or victimized. It sucks, and I hate that I'm in this situation and Lorraine and I have to go through this again, but the reality is that not everybody beats it the first time. Somebody's got to fall into those "minority" numbers we all read about back when we were checking out our odds after getting diagnosed. I knew it could happen to me, I just hoped it wouldn't and believed for a while that I'd fallen into the happy majority. I know that I'm not alone, and that helps so much.

My real fear is over finances -- I was hoping to secure a better paying job but will have to wait until treatment's end since I'll have a 3 hour round-trip drive to get my rads. You usually get them 5 days a week, don't you? I definitely need to do my homework on rads, since they're a new thing for me. I'm very grateful that my current employer will work with me on my schedule so I can get to my treatments before work.

Lorraine and I both thank you from the bottom of our hearts for rushing to my side with such loving support. You're like a warm blanket on a cold night, and I am so very grateful.

Round II

I've relapsed. Between January (and November also) the active node has increased from around 1 cm to almost 9. I now carry a 3 1/2 inch mass in my chest, according to my new onc, who doesn't know why my previous onc wouldn't have biopsied it back in February, when it had, over a period of just over 2 months, shown up on 2 PETs and one CT scan.

Bottom line: I go in for a mediastinoscopy on Monday get it biopsied, and on Thursday I meet with my new oncologist and a radiation oncologist to discuss treatment. It's looking like I'm going to get radiation, as the relapse is localized, rather than systemic. (It's isolated to one spot, rather than showing up all over the place, as was the case at the time of my diagnosis.) If it were systemic, we'd be talking about a stem cell transplant. Just to cover all bases, and being the thorough sort of lymphoma guy my new (and more trustworthy) oncologist is, he's consulting with the stem cell transplant people also, just to make sure that rads are the best way to go. He says radiation is the first line treatment in a relapse case like mine, though.

We're in our new house now, and in the throes of unpacking, getting the pool installed, and preparing for the arrival of Lorraine's family in 2 1/2 weeks.

It's all a lot. I'll be back later to post more. I know this is a very dry entry for the delivery of such awful news. I just wanted to get it up here for now -- I'll be back later to flesh out the rest of it.