New Hodgkins patient

McJen · New User Joined: 21 Jun 2008 Posts: 5

Hi, I'm new to the Lymphoma club (might as well make it sound nice)

went to the doc in mid-May(2008) with a weird lump on the collar bone, sent home for a week to see if it changed, next doc did a chest x ray which found masses in the chest ordered biopsy. Biopsy done May 28, May 30 told I had Hodgkins Disease of which I knew nothing (didn't even understand it was a cancer at first). June 1, I was a ton smarter. Since then I've met with oncologist twice, CT scan, PET scan, PFT, and Mugga and well everytime a doctor gets near me they draw a pint of blood. June 19 (friday) had a port put in and I start chemo on Tues June 24. I will be given ABVD every other week for 6 months. The oncologist gave me 2 perscriptions one as a backup anti nausea med and the other to control the acid when the masses break up (allipurinol) so my heart and kidneys don't fail which the doc had me start last week.

I have been diagnosed with Hodgkins Lymphoma, Stage III, type A, non bulky. I have a 1.5 centimeter spot on my spleen (seen with CT scan)which we are waiting on the PET scan results (not sure I understand) but the oncologist thinks this may not be a cancerous spot, but otherwise no other cancererous masses on any organs.

I'm lucky, don't feel sorry for me. I'm 38 female, no cancers in the family other than my granfather who was diagnosed when he was 92. I have 3 kids ages 8, 13 and 15. (and yes I'm getting to my questions) I have never really been sick in my life. I never had the mumps, measles, chicken pox, mono....... nothing except a strep throat when I was 14. I don't even get the flu when everyone in the house is puking and snotting on me. So, needless to say, I'm scared poopless.

So, I'm looking on advice as to what to kinda expect other than hair loss (I was told the "A" of the AVBD was going to cause hair loss ... I figure this is just a saving of hair care products that I can spend on copays). I'm just looking for someone who has been there done that, that can give me some advice on what to expect or maybe how fast to expect the typical symptoms of the chemo. Everything has been happening so fast, when someone says "chemo" these horrifying images come to mind which is people who look (and probably are) on their deathbed. is the nausea non stop? is it worse than morning sickness? etc. I know this is different from person to person but a general better idea. sorta like saying this type of chemo is like having the flu for 6 months or something. It's the unknown of what really to expect that is killing me, because I can't warn my kids of what changes are about to occour. Any advice would be greatly appreciated.

My next question(what is bothering most right now) is the darn port.. where the port was put in (left side just under the collar bone near the breast) is more painful than what the biopsy was (same side just above the collar bone). It hurts down into my arm, I can't lay down because I can't get up. I can't lift anything with my right side because of the way it causes pain to my left side. Coughing or blowing my nose hurts. Is this normal for 2 days after? I don't really have a way of reaching the surgeon until Tuesday and the cancer center isn't open till monday. Is it supposed to hurt this much or is there something possibly wrong with it and I should call into the 24/7 nurse? (obviously by my long post, I've taken a pain killer, but it just makes me sleepy doesn't really help much with the pain. I'm having trouble figuring out what is "normal" for just after the port is put in. I would assume this would be abnormal if it were a few weeks into treatment.

Thanks in advance for any information and tips.

J

jfkbluecircle · Posted: Mon Jun 23, 2008 8:20 am Post subject: Re: New Hodgkins patient

Hi, McJen,
I am a year younger than you, and I had Stage IIIB Nodular Sclerosing Hodkins 11 years ago (13 1/2 cm tumor in trachea, 7 cm in spleen and diffuse tumors in all lymphnodes above and in my abdomen). I had six months ABVD chemo, no radiation.

Like you, I was (an am) always healthy. It's such a shock, I know, to hear that you have such a disease when your health has always been something you can count on.

But, know this: the treatments offered are stellar. You will be fine. Some even say, (sounds insensitive, but kind of true) if you get cancer, this is the type you 'want' to get.

As far as chemo side-effects, they vary for everyone. For me, it definitely was not as horrific as portrayed in movies. I worked full-time throughout my tx, I was tired, the anti-nauseates worked very well. My appetite was a bit strange-- I wanted only whited-colored food: rice, mashed potatoes, bread (and I do not even like white bread).

Experiencing the loss of my long hair (always was known as 'the chick with the long hair') was tough. I cried when I got my wig. But, I decided to cut my hair and try a new style before it started to come out. It was empowering. I buzzed it very short when it really started coming out (I advise against this; my scalp was very sensitive and it was not comfortable to lay against a pillow, etc.). If your going bald, go bald. I shaved it all off in August of 1997. Again, another empowering move. I was also comforted by the knowledge that it would grow back in.

I wish you only the very best during this uncertain time. Please keep me posted on how you are doing. I'm rooting for you Smile

and I know others in this amazing online community are, too.

Best,
Jessica

Anonymous · Guest

McJen,

I hope your first treatment went well. How are you feeling? How's the port now?

My port took a while to settle down. I thought it was because I was nursing and the breast tissue around it was extra-sensitive, but maybe it's just normal afterall.

I'm just barely ahead of you treatment-wise. I have my second dose for cycle one on Thursday, June 26. I'm planning to donate my hair to Locks of Love once it starts to fall out. Not that I'm looking forward to that, but it makes me feel a whole lot better about it.

The only extra advice I have to offer is ask for Ativan if you're not using it already. It's an anti-anxiety med that's commonly used as an anti-emetic in cancer patients. I love it.

I'll keep checking in on you. You can follow my story on my blog: http://bitsofmyself.com.

Wishing you all the best!

McJen · New User Joined: 21 Jun 2008 Posts: 5

I finished the intake of drugs (does this make me a druggie?) ABVD at 2pm, I took the anti nausea meds when I got home as advised even though I wasn't feeling sick. I ate a huge greasy burger, fries and milkshake. Slept for a couple of hours. It's after midnight and I have boundless amounts of energy. My chest doesn't hurt (felt like a wooden stake had been driven through my chest) for the first time in weeks. (feels like those chest masses might be breaking up because my voice is closer to normal too, but I won't hold my breath until that pain is gone for longer) The port has settled down where I can straighten out my arm without pain. I haven't thrown up since, nor do I feel sick. I keep brushing my teeth and rinsing my mouth because I can't get this metallicish taste that makes my mouth feel like I haven't brushed my teeth in days out of my mouth. Everything tastes weird. You would have thought the meal I had afterwards would have made me sick all by itself (it usually does, but it sounded good at the time)

They used a vein in my arm instead of the port, because of the pain I was having with the port. I only had a slight problem where they had to slow the "D" part of the AVBD down. I also had to keep a heating pad on it. It felt like someone had done a karate chop and broken my arm.

I'm a little strange. I like the pink pee... it's different!!

So, for the first session and evening, I can say I sure had myself worked up over nothing. (I suspect this is going to get worse before it gets better).

Thank you for all your advice and support. It really calmed to me to know that you could work full time and fight cancer at the same time.

As far as the hair, that doesn't really bother me. I kinda deserve to lose it. Everyone has always thought I was so lucky to have this naturally blonde really thick, really curly hair, personally I cussed it every morning. I cut off at least 8 inches, left with me with 4. I now have this Einstein hardo type thing that comes naturally. When it starts to fall out, I'll shave it. My kids have started collecting temporary tattoos, as a way of making something that should be tragic fun. The youngest (age 8 ) is actually looking forward to my hair loss. I'm a little worried about when this over everyone tells me that it comes in thicker and curlier at first. I can't imagine my hair being any thicker or curlier than it is now. But, maybe by then, with it getting colder out that will be a good thing, either way it's seems such a small thing to worry about.

Anonymous · Guest

Glad to hear it went well. Check back in tomorrow, er, later today to let me know how you're settling into it. As long as you take your anti-nausea meds you'll do great. They told me I'd feel better pain-wise too, right after the first treamtent.

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