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Anyone here have or had Hodgkin's Lymphoma? (1 Viewer)

Just stumbled upon this thread. First off, T&P as you go through this. My father had Lymphoma. Been in remission for the last 6, almost 7 years. He's a bit older so some health issues arose after his chemo and radiation (RLS) but other than that lives a pretty normal life, healthy life. Wishing you the best

 
Had surgery today to get my chemo port implanted. Was not fun to say the least, I was led to believe it was a piece of cake procedure.

They believe I didn't need to be put under and only needed to be lightly sedated. Well I wake up an hour and half after the procedure in incredible pain, to find out I was fighting my surgeon during surgery the words 'violently' and 'thrashing' were thrown around. Apparently sedation isn't very effective on me. ####ty way to learn that lesson.

I begin treatment next monday.
Best of luck with the treatments. Where is your port?

 
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Had surgery today to get my chemo port implanted. Was not fun to say the least, I was led to believe it was a piece of cake procedure.

They believe I didn't need to be put under and only needed to be lightly sedated. Well I wake up an hour and half after the procedure in incredible pain, to find out I was fighting my surgeon during surgery the words 'violently' and 'thrashing' were thrown around. Apparently sedation isn't very effective on me. ####ty way to learn that lesson.

I begin treatment next monday.
Best of luck with the treatments. Where is your port?
Thanks. Its right above my pectoral but below my collarbone, left side - right next to where they did a deep tissue biopsy 20 days ago. I was just starting to get the strength back in my left arm, I had trouble lifting a water bottle today.

 
Had surgery today to get my chemo port implanted. Was not fun to say the least, I was led to believe it was a piece of cake procedure.

They believe I didn't need to be put under and only needed to be lightly sedated. Well I wake up an hour and half after the procedure in incredible pain, to find out I was fighting my surgeon during surgery the words 'violently' and 'thrashing' were thrown around. Apparently sedation isn't very effective on me. ####ty way to learn that lesson.

I begin treatment next monday.
Best of luck with the treatments. Where is your port?
Thanks. Its right above my pectoral but below my collarbone, left side - right next to where they did a deep tissue biopsy 20 days ago. I was just starting to get the strength back in my left arm, I had trouble lifting a water bottle today.
The nice thing about a port is you can go swimming, take showers, etc. and you don't have to worry about infections once the incision heals. Way more low maintenance than a PICC line.

 
About 3 hours into treatment now, incredibly bored.

Had a very brief reaction to the chemo, cold sweats and clamminess, that been it so far, besides the incredible fatigue.

 
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I just came across this thread too and want to say I am inspired by your courage and positive attitude. Hang in there brother.

 
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I just came across this thread too and want to say I am inspired by your courage and positive attitude. Hang in there brother.
If I inspired you in anyway thats amazing, but to be perfectly honest my anxiety is driving me up the wall and when it isn't I'm being waited on hand and foot by healthcare professionals and my immediate family - I feel like a baby. I was losing my #### today before treatment, I was presented with an overwhelming amount of material that suggest the chemo will negatively affect me little if at all, aside from losing my hair and possibly developing some mouth sores but I just couldn't shake the feeling that I was gonna be that 1:2000 guy. All-in-all the treatment went well, 5 more to go (next is in 3 weeks), as well as a lifetime of ####### PET scans.........................

The worst part about the treatment honestly was the the medication other than the chemo, I asked my oncologist if I could take my Zanax during chemo and he said I could, but that he would just order me some Ativan - which if let me tell you, if you haven't had Ativan its absolutely amazing, although I hear its horribly addicting and the withdrawls are terrible - but it chilled me right out within seconds. Unfortunately after I hit my reaction to the chemo about 30 minutes in they gave me a double dose of Benadryl, the combined affect of the Ativan and the double dose of Benadryl put me in zombie mode for about 3 hours.

Thanks for the well wishes from everyone, its amazing how many people put themselves out there it makes me question my cynicism when I run into such a high concentration of nice people. One of my moms casually mentioned online that I began treatment on Monday and was looking for hats if anyone knew of some good deals on nice ones; I kid you not, a complete stranger overnighted two brand new hates which were both great looking. It was a pretty good ending to a really stressful day. Didn't hurt that Mccoy had a great game today, locked up all my week 1 games.

 
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Glad to hear that things went reasonable well today. Make sure to use the mouthwash they gave you to keep your mouth clean. Mouth sores suck. And if it gets out that you're collecting hats, you're going to end up with hundreds of them.

 
Glad to hear that things went reasonable well today. Make sure to use the mouthwash they gave you to keep your mouth clean. Mouth sores suck. And if it gets out that you're collecting hats, you're going to end up with hundreds of them.
Nothing too impressive, they actually told me to just brush my teeth after every meal and then rinse with half cup of warm water, table spoon of salt and baking soda.

 
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Glad to hear that things went reasonable well today. Make sure to use the mouthwash they gave you to keep your mouth clean. Mouth sores suck. And if it gets out that you're collecting hats, you're going to end up with hundreds of them.
Nothing too impressive, they actually told me to just brush my teeth after every meal and then rinse with half cup of warm water, table spoon of salt and baking soda.
Do it religiously. Depending on how strong your treatment is, mouth sores may be unavoidable, but you want to prevent them if you can. Maintain good mouth hygiene. And Ativan wasn't addictive in our experience. But we used it for breakthrough nausea (when the zofran dosage wasn't strong enough), so it wasn't like it was a constant dosage or anything. May be worth getting some Marinol as well, just in case.

 
Best of luck again to you, Run It Up...
Thanks again.

Glad to hear that things went reasonable well today. Make sure to use the mouthwash they gave you to keep your mouth clean. Mouth sores suck. And if it gets out that you're collecting hats, you're going to end up with hundreds of them.
Nothing too impressive, they actually told me to just brush my teeth after every meal and then rinse with half cup of warm water, table spoon of salt and baking soda.
Do it religiously. Depending on how strong your treatment is, mouth sores may be unavoidable, but you want to prevent them if you can. Maintain good mouth hygiene. And Ativan wasn't addictive in our experience. But we used it for breakthrough nausea (when the zofran dosage wasn't strong enough), so it wasn't like it was a constant dosage or anything. May be worth getting some Marinol as well, just in case.
Marinol looks like a appetite increaser? I've only had a little bit of nausea so far and no loss of appetite, they suspect I'll continue to have very little while I'm on Prednisone and 2 anti-nausea medicines (names escape me). But if they don't work out ill definitely bring it up with my doctor.

Prednisone is kicking my ### right now, been up for 28 hours, just took my daily dose and I can already feel it, probably won't go to sleep for a few hours at least.

 
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Just thought of you and wondered how you are holding up. :thumbup: Hope you are doing well.
Doing good, had my first evaluation following my chemo last Monday today. Blood counts are all good, in a weird state physically though, exhausted but also having insomnia. Its obnoxious being able to fall asleep basically any point of the day but not being able to stay asleep for more than an hour.

Doc suggested that I take my Xanax and some Benadryl before going to sleep, planning on doing just that hoping ill be able to sleep for more than 4 hours at a time.

Apparently these next 4-5 days are when I'll be feeling the effects of the treatment the most, fortunately I haven't had any nausea of note. Also at some point in the next 10 days I'm supposed to start losing my hair - can't wait.

 
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Just thought of you and wondered how you are holding up. :thumbup: Hope you are doing well.
Doing good, had my first evaluation following my chemo last Monday today. Blood counts are all good, in a weird state physically though, exhausted but also having insomnia. Its obnoxious being able to fall asleep basically any point of the day but not being able to stay asleep for more than an hour.

Doc suggested that I take my Xanax and some Benadryl before going to sleep, planning on doing just that hoping ill be able to sleep for more than 4 hours at a time.

Apparently these next 4-5 days are when I'll be feeling the effects of the treatment the most, fortunately I haven't had any nausea of note. Also at some point in the next 10 days I'm supposed to start losing my hair - can't wait.
Benedryl always knocks me out so hopefully it will have the same effect on you. A few years back I had to serve weekends in county jail and would take like 4 or 5 Benadryl on the way there Friday evening. I would get to the cell, find my bunk and pass out until Saturday morning.

Have you considered a preemptive head shave or are you just gonna wait and see?

I'm glad to hear you are not getting nauseous, I hope it stays that way.

Anyway, just thought of you and wondered how you are doing. Keep us updated and hang in there. :thumbup:

 
Benedryl always knocks me out so hopefully it will have the same effect on you. A few years back I had to serve weekends in county jail and would take like 4 or 5 Benadryl on the way there Friday evening. I would get to the cell, find my bunk and pass out until Saturday morning.

Have you considered a preemptive head shave or are you just gonna wait and see?

I'm glad to hear you are not getting nauseous, I hope it stays that way.

Anyway, just thought of you and wondered how you are doing. Keep us updated and hang in there. :thumbup:
It has a similar effect on me.

I've been planning to shave my head but I just keep avoiding it, I'll get around to it hopefully before it starts falling out, everyone keeps telling me its a shocking how fast it happens and that its better to just avoid it.

 
Benedryl always knocks me out so hopefully it will have the same effect on you. A few years back I had to serve weekends in county jail and would take like 4 or 5 Benadryl on the way there Friday evening. I would get to the cell, find my bunk and pass out until Saturday morning.

Have you considered a preemptive head shave or are you just gonna wait and see?

I'm glad to hear you are not getting nauseous, I hope it stays that way.

Anyway, just thought of you and wondered how you are doing. Keep us updated and hang in there. :thumbup:
It has a similar effect on me.

I've been planning to shave my head but I just keep avoiding it, I'll get around to it hopefully before it starts falling out, everyone keeps telling me its a shocking how fast it happens and that its better to just avoid it.
I don't know. Not trying to give you advice but if it were me I would shave it off before hand. Seeing it fall out would be depressing to me. Plus, you might be surprised with how cool you will look with a shaved head. My hair is longer now but I look pretty awesome with a shaved head. :D

 
Benedryl always knocks me out so hopefully it will have the same effect on you. A few years back I had to serve weekends in county jail and would take like 4 or 5 Benadryl on the way there Friday evening. I would get to the cell, find my bunk and pass out until Saturday morning.

Have you considered a preemptive head shave or are you just gonna wait and see?

I'm glad to hear you are not getting nauseous, I hope it stays that way.

Anyway, just thought of you and wondered how you are doing. Keep us updated and hang in there. :thumbup:
It has a similar effect on me.I've been planning to shave my head but I just keep avoiding it, I'll get around to it hopefully before it starts falling out, everyone keeps telling me its a shocking how fast it happens and that its better to just avoid it.
It also happens unevenly. You don't have to go all the way down to the scalp though. You can go with a number one buzz cut, and then the loss from there isn't as noticeable.

 
Best of luck to you. Not sure where you are at here in MO but if you are in a hospital here in STL let me know and I will gladly add to you hat collection. I love west of the cit y but am down hat way a bunch.

Thoughts and prayers to you. Stay strong.

 
2.3 cycles in and I'm feeling pretty good. Had an evaluation yesterday and my blood counts are great, I have another evaluation next monday followed by a PET scan that will basically tell me if the treatment is working or not, if it is working may already be in remission but will have to finish out my treatment either way.

Got great news as well that I qualified for temporary social security benefits and ill likely qualify for medicaid. If I do qualify for medicaid it should cover 99% of my medical bills.

Everythings coming up Millhouse.

 
Good news all around. Will be praying real hard for continued good news.
I was very sorry to hear about your son.

Saturday I got woken up by a phone call that told me the results of my PET scan came back all negative with no abnormalities. Today I met with my oncologist before starting my third cycle of chemo, he went into more detail, for now at least I've gone into a near if not full remission, with the three notable tumors being completely gone.

I'll continue my treatment as planned, ending sometime mid January and ill continue to receive periodic PET scans after that.

Weird little tidbit, my hair fell out almost completely in about 5 days two weeks ago and in the two weeks since my hair has grown back to almost a 1/2" ... I was told it might grow back a little, but that it would just fall out again, but the hair growing back isn't falling out :doh:

 
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Good news all around. Will be praying real hard for continued good news.
I was very sorry to hear about your son.Saturday I got woken up by a phone call that told me the results of my PET scan came back all negative with no abnormalities. Today I met with my oncologist before starting my third cycle of chemo, he went into more detail, for now at least I've gone into a near if not full remission, with the three notable tumors being completely gone.

I'll continue my treatment as planned, ending sometime mid January and ill continue to receive periodic PET scans after that.

Weird little tidbit, my hair fell out almost completely in about 5 days two weeks ago and in the two weeks since my hair has grown back to almost a 1/2 half... I was told it might grow back a little, but that it would just fall out again, but the hair growing back isn't falling out :doh:
Wow - great news!

 
Good news all around. Will be praying real hard for continued good news.
I was very sorry to hear about your son.

Saturday I got woken up by a phone call that told me the results of my PET scan came back all negative with no abnormalities. Today I met with my oncologist before starting my third cycle of chemo, he went into more detail, for now at least I've gone into a near if not full remission, with the three notable tumors being completely gone.

I'll continue my treatment as planned, ending sometime mid January and ill continue to receive periodic PET scans after that.

Weird little tidbit, my hair fell out almost completely in about 5 days two weeks ago and in the two weeks since my hair has grown back to almost a 1/2 half... I was told it might grow back a little, but that it would just fall out again, but the hair growing back isn't falling out :doh:
:thumbup:

 
Treatment 4 of 6, in the books.

Thing I hate most about the chemo is the needle itself. I've been told that ports are supposed to be flush with the skin and should be no big deal to hit. Well all four of my treatments its taking a good hour of repeatedly sticking me with a two inch needle, my treatment before last they struggled so hard to find the port with 3 sets of hands - I was incredibly sore afterwards just from 3 people pushing down on my port to hold it in place, then the freaking needle popped out of the port mid-treatment and the medication spilled into my body, thats when I found out that chemo medicines all over your muscles burns like ####### crazy.

Well today (4th treatment) they couldn't find my port at all, so after they diligently searched for an hour (~20 needle pokes), they came to the conclusion that it simply was not possible and we would have to do it intravenously - which I first protested against. I mean I didn't go through my worst surgery to date to avoid blowing out my veins to just go and blow out my veins anyway.

Treatment went well intravenously, they scheduled me an emergency visit to radiology to identify the problem. It took them all of 5 seconds under an xray - my catheter is free-floating and not going into my heart anymore which allowed my port to freely float much further away.

Needless to say, I'm incredibly stressed right now.

 
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Ugh...that sux. I would be nervous too. What the hell are they doing over there?

Stay strong bro. Hopefully they get their act together.

 
Waiting to hear back from my oncologist, likely tomorrow. No matter what my current port has to come out, whether they put another one in depends on my doctors opinion.

When I saw one of the leading specialists for my particular cancer back in august, she said that for people with the cancer I have, or the treatment I'm receiving, they rarely have a port placed and just receive it through an IV. My doctor agreed with the treatment but not with how to deliver it so I got my port placed.

Was the worst surgery I've ever had, and I'm not sure its anyones fault. I apparently woke up during surgery and was thrashing and when they tried to restrain me and I was fighting them - so I've been told. All I know is that when I came to in the recovery room, it felt like multiple people had held me down and beat the everliving #### out of me.

After how well the treatment went to intravenously as well as the specialists opinion, I'm inclined to argue with my doctor against replacing the port and instead just removing it.

 
I just read this thread for the first time, I'm very impressed with your strong approach to this - it will help a lot with your positive outcome.

Congrats on the near to full remission. :thumbup:

I'm sorry to hear about your port problems today, I hope that's a fairly straight forward thing to remedy.

 
I just read this thread for the first time, I'm very impressed with your strong approach to this - it will help a lot with your positive outcome.

Congrats on the near to full remission. :thumbup:

I'm sorry to hear about your port problems today, I hope that's a fairly straight forward thing to remedy.
Thanks and me too.

 
That really sucks about the port. Are they suggesting getting the port out and just doing an IV for the last two treatments? A PICC line is another option if the IV is problematic.

Sorry you have to deal with this complication. Best of luck to you on the balance of your treatments.

 
That really sucks about the port. Are they suggesting getting the port out and just doing an IV for the last two treatments? A PICC line is another option if the IV is problematic.

Sorry you have to deal with this complication. Best of luck to you on the balance of your treatments.
The radiology department which I'm not on good terms with was who had to figure out the problem with my port. The surgeon I talked to who was trying to access my free floating port with a pair of pliers and a needle while carrying on a conversation with me and watching it through the x-ray monitor, he told me regardless that the port would have to come out. Afterwards I spoke to either head of radiology or surgery and they told me that they needed to replace it.

I won't talk to my oncologist until tomorrow, he told me horror stories about receiving this medicine through an IV and really pushed for the port, but I'm really holding out hope that I can avoid surgery.

I looked into PICC lines, I read they are known to be viable for 1-4 weeks which falls into a weird part of my cycling meaning I would have to have a new one placed for each of my last two treatments, I'll definitely bring it up however.

 
Where are you getting that info on the PICC line? My son had his PICC line for something like 3 months. It has to be flushed daily (easy enough to do) and a nurse has to change the dressing once a week.

 
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Where are you getting that info on the PICC line? My son had his PICC line for something like 3 months. It has to be flushed daily (easy enough to do) and a nurse has to change the dressing once a week.
That specific tidbit directly from Wikipedia, figures.

 
The down side to the PICC line is that you have to keep the insertion area dry (so no swimming, and you have to wear a sleeve to shower). The upside is no needles.

 
Tackling Dummies said:
I had Non-Hodgkin lymphoma a while back. PM me if you want to talk and I'll pass along my contact info.

Hang in there.
The form of Hodgkins I have is atypical and is now viewed as a Hodgkins but more Non-Hodgkins, just interesting.

Wasn't able to get ahold of my oncologist today but I received a call from a practitioner and was not happy to find out that they will likely want me to replace my port, for only two treatments. I don't know the effects the medicine has on your veins, but I do know the surgery to have it placed was in terms of pain the worst part of this ordeal. Not looking forward to having to have my port removed, have another port placed and then receive treatment 3-4 days after the placement which was incredibly painful the first time. Now im just complaining... frustrating.

 
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Tackling Dummies said:
I had Non-Hodgkin lymphoma a while back. PM me if you want to talk and I'll pass along my contact info.

Hang in there.
The form of Hodgkins I have is atypical and is now viewed as a Hodgkins but more Non-Hodgkins, just interesting.

Wasn't able to get ahold of my oncologist today but I received a call from a practitioner and was not happy to find out that they will likely want me to replace my port, for only two treatments. I don't know the effects the medicine has on your veins, but I do know the surgery to have it placed was in terms of pain the worst part of this ordeal. Not looking forward to having to have my port removed, have another port placed and then receive treatment 3-4 days after the placement which was incredibly painful the first time. Now im just complaining... frustrating.
Did you ask about a PICC line instead?

 
Was unable to talk to my oncologist to suggest a PICC.

My nausea was a non-issue until the treament before last, its not as bad this time as it was the time prior leading me to believe more of the medicine leak out than they suggested. I'm currently on 3 different anti-nauseas, including Zofran, the other two escape me atm.

 
FYI-

My blood counts were the suck, constantly close to being hospitalized. Mouth sores from the start to finish of chemo was normal for me.

After chemo, I'd be sleeping and watching TV for 3 days. No energy, no appetite, carrying my little trash can to throw up in just in case.

Medicinal herb helped w/ sickness and appetite BTW.

 
FYI-

My blood counts were the suck, constantly close to being hospitalized. Mouth sores from the start to finish of chemo was normal for me.

After chemo, I'd be sleeping and watching TV for 3 days. No energy, no appetite, carrying my little trash can to throw up in just in case.

Medicinal herb helped w/ sickness and appetite BTW.
Thanks, I actually have several reliably ins to get some if I felt it got to that point, socially smoked before diagnosis haven't since. My blood counts have actually been incredibly good, ive been amazingly lucky with this treatment, its everything but the treatment that keeps being uncooperative.

 
Towards the mid-point of my treatment, they added a daily injection to aid the red blood count. The needle was like a frackken whale harpoon, hated it. I don't remember the medication, but joked w/ my doctor about changing it to something else and was shot down.

Re: appetite, I had the strangest cravings and also could not watch TV because even he commercials made me want to be sick. I re-gained my weight slowly after treatment BTW.

 
Was unable to talk to doctor today but ive made up my mind, im not going to get a replacement port. I feel like its the right decision.

 
Just had my port removed under local anesthesia. I can now safely say that being awake during your own surgery is a disgusting feeling.

 
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