Hi All,
I finally got a conclusive diagnosis today. I had a surgical mediastinotomy last week to ensure that there was enough tissue this time. I'm looking at NSHL. I now have my scans, port installation, and bone marrow biopsy scheduled. The Doc said that I am looking at 8 cycles of ABVD over 4 months with 5 weeks of radiation to follow. She of coarse said that that may change depending on the results of the scans and such.
I really thought it would be nice to finally get rid of the uncertainty of the last few weeks but it really was quite the opposite. I guess that I was secretly finding comfort in the very slim chance that the preliminary findings were wrong.
I'm sorry to hear that you are struggling right now. I know when my husband was waiting to find out his diagnosis, that was the hardest time for us. I felt so much better after we met with the oncologist and we had a plan in place. I guess we all deal with these things a little differently.
I hope you will continue to keep us updated on your progress. When do you start your treatments?
Gregswife-
Thanks for your post. I am feeling much better about things today. I have my port installation, pet scan, muga scan, lung function test, and bone marrow biopsy all scheduled in the next 14 days. Im guessing ill start chemo the following week when my oncologist returns from her vacation. She seems like she is ready to rock and roll now that we have the diagnosis.
I was thinking things over last night and I guess the part that was difficult to hear is the doctor told us I was in an "unfavorable" classification due to my ESR coming back high.
We originally took that as bad news. When the doc says uses the term "unfavorable" I would think that not a good thing. However, I did a bit of internet research last night and it sounds like that is just another classification system for HL. I found some statistics that indicate I have a slightly higher chance of 5 year relapse and a slightly higher chance of standard treatment resistance. Considering how good the base statistics are this is not really worth worrying about in the first place.
Of course this is all based on internet research, which I always take with a grain of salt. If anybody here has some solid knowledge on this I would love to hear from you.
ms.P,
I haven't been staged yet. My oncologist gave me the run down on how much chemo and radiation I would need if all of my scans come back as expected. She said that my regiment may change if the Pet scan shows more areas are involved or if the bone marrow biopsy shows there is bone involvement.
From my understanding they usually do chemo and radiation for stages I and II because there are only a few areas involved. At stages III and IV the lymphoma has spread to too may areas for radiation to be safe. This is just based on what people have said and what I've read. I'm sure people here on the group will be able to provide more information.
Hi there,
I was diagnosed with Hodgkins stage 2A and I also only had ABVD therapy, no radiation. This March will mark my 5 years cancer free! Good luck to you, stay positive and remember to just take one day at a time.
Take care,
Kim
Kimmie71,
Congratulations on your upcoming 5 years. Thanks for providing some real-world information. I have done quite a bit of reading, but it can hard to tell how accurate the source is these days.
Hi Familyman,
I too was diagnosed with NSHL " classic Hodgkins" at Stage II Type A I have 4 cycles of ABVD, which is 2 chemo a month. I then will have 3 - 4 weeks of radiation depending on how my scans go after the chemo treatment. I jest finished my 6 th treatment on Wednesday with two more to go!
If the cancer is not found in your bone marrow or other organs, you will most likely be stage III or less. I am not sure about radiation for Stage III or IV. Your dr. Can give you more info on that once you are finished with your test and your Staging.
I wish you the best and hope you keep in good spirits! Thoughts are will you!
- Deana
Thanks for your well wishes Ddreal71 and congratulations on your progress.
How hard has the ABVD been for you? I'm just a bit anxious at this point because I have hear everything from not so bad to horrible. I know its different for everybody. I guess im just hopeful that I am on the not so bad half of the curve.
Thank you Familyman,
To be honest, the treatments started off rough for me. I lost 12 lbs so far due to the nausea. That's not to say it will happen to you. Everyone is different. Since I was so sick in the beginning my dr. gave me Emend and Ativan for the nausea. I am also taking Xanax and a low dose of steroids for the 3 days after chemo. All of which have helped me get through the "rough" days.
What has also helped me is that I go in for IV fluids the day after chemo to rehydrated me. I highly recommend this if you are having a rough time after chemo.
If you have issues with constipation, take a laxative right away. Do not wait more than 48 hours....it can be extremely painful and add to any nausea (just my recommendation).
If you are prone to motion sickness, you might have a harder time dealing with chemo. I also have inherited a strong sense of smell so everyone has to be "unscented" for me.....it's like your a bloodhound!
Now that I am on the home stretch, I can't tell if it's getting better or I am just getting used to it.
I kind of forgot what it feels like to really feel good again.
Please keep us posted on your staging and I wish you the best of luck. Positive thoughts always!
- Deana
Hey Familyman- welcome to the little elite group of us with apparently schlerosed nodes... YAY! All jokes aside, it is a twisted relief to find a final diagnosis and begin something, even if it is the great mountain that is chemo.
It's quite weird how much my treatment regime is like Ddreal71's. I had 6 ABVD and a month of radio (but I was only stage 2). Finished everything in May of this year and hair is growing back strong.
Emend and Ativan are really good anti-emetics and Ativan will help to take the edge of any nerves that may be lurking. Believe me, it's normal to have them. It's your bodies way of reminding you that this kind of thing is not normal.
I also took Xanax (Temazapam is good too), to help get off to sleep. It's really important that you get some rich sleep as its the best time for your body to regroup.
I too had a bit of a rough time with the treatment and IV rehydration during the actual infusion time helped alot. The doctor told me ABVD is one of the roughest regimes but that's why it has such a great effect. Glass half full, remember?
Push for what you want, if you can't sleep... ask for some help. If you're having reflux or heartburn, ask for some nexium. Now is the time to use all those little white pills that we normally hesitate in popping.
As for what will happen with you, I pray this is gentle on you as it sounds like you've already had a mediocre year. You'll hear this a thousand times, but everyone is different. When I went through mine, there was another girl exactly my age, diagnosis and regime. She sailed through... I was green. Go figure. She battled some fatigue, and had a dry throat. It's just simply not fair. I laugh now becasue I can, six months and I swear every morning feels better than the last.
Let us know how your feeling, your symptoms and we'll all brainstorm together. We'll be thinking of you.
Love Annie (a fellow schlerosee).
Hi Familyman. I wanted to add my 2 cents. My daugher was diagnosed in early June with stage 2A, X factor. The x factor was because the mass in her chest was about 15 centimeters.
Her treatment is every 2 weeks of ABVD for 12 weeks, followed by 4 - 6 weeks of radiation every day, She has virturly breezed thru the chemo. We have nauseu pills for when she feels sick and I have to give her injections of neupogen for 3 days on her off weeks to boost her white count, but she is doing OK
Thanks for the insight guys. My wife has been in major prep mode over the last week or so as well. She went out and picked up "Chemotherapy and Radiation for Dummies" (No joke, its real) and a Chemo cookbook with recipes indexed by side-effect. So far the books have been very helpful for her. She has a better understanding of what is ahead and she is ready.
I can't thank you all enough for your posts. This place has been a lifesaver for me.
FamilyMan:
I've been away for a week or so so I'm not quite caught up, but allow me to try and clear up favorable vs unfavorable. yes, the former is preferable, but the latter isn't the end of the world.
I think the primary reason you're being told it's unfavorable is because of the bulky disease-- the mass in your chest. That alone, or the presence of B symptoms, generally marks HL as unfavorable.
Sorry if you've already been through this, I'm just trying to catch up.
Have you checked yourself against the HL Prognostic Index? You need:
Age
Gender
Stage
Albumin
Hemoglobin
Leukocytosis (WBC equal to or greater than 15,000/mm3?)
Lymphopenia: Lymphs less than 600/mm3 or less than 8% of WBC count)
Hey Ross, welcome back. I was starting to wonder where you had been.
The oncologist actually said that I don't have bulky disease. The primary mass in my chest is 5cm by 2.5cm. I have been classified unfavorable because my ESR (Sed Rate) is 85. Anything above 50 without B symptoms or 30 with B symptoms is considered unfavorable. The normal range is between 0 and 15.
I would love to check against the HL prognostic index but I am still waiting on staging. I have my PET scan tomorrow, my bone marrow biopsy and muga scan on Friday, and my lung function test and port installation next week. I'll see the Doc again on November 10th to get all of the results.
I would love some more information on what exactly the "unfavorable" designation means in terms of recovery and outlook if possible.
FamilyMan:
Looking through the literature, the best I can find that sort of sorts out favorable vs unfavorable is this Blood article, although it doesn't fully explain things. My guess is that the terms were established by the German Hodgkins Study Group at some point, but whether they were defined in a journal or not, I can't say.