stage 4 HL diagnosis-- how much worse is this going to get?

Julienne

I was diagnosed with stage 4 HL in April and I had my second round of the ABVD just over a week ago.  I felt horrible after my first round.   I had a fairly traumatic mass exodus of hair today, but aside from that, the second round wasn't nearly as bad as the first.   Was the first one the worst, or am I in the eye of the storm or something?  They had to give me pain killers through that first one which I didn't need this time, so I'm sure that was a contributing factor, but the fact that I've felt so good after this round has me worried because there is no way that this is going to be that easy.  So.. How much worse is this going to get?   All of the pain that was caused by the cancer is gone and I'm assuming that I'm going to really feel like I'm being poisoned here pretty soon.  Sharing any experiences would be appreciated.  Thanks!

Max Former Hodgkins Stage 3

Beginning ABVD

Julienne,

Welcome to these Boards, although  I am sorry that you have a need to join.  I did six cycles (12 infusions, or one treatment every two weeks, for six months) of r-abvd in 2009, which is as much as the FDA allows.  How much  are you scheduled for ?  You are EXACTLY on schedule for your hair loss -- almost always a few days after the second infusion with abvd.  ABVD is the most common first-line therapy for HL, so a good many folks here have used it or are familiar with it.   Are you going to receive radiation ?

You state that the cancer is in your lower back, which would cause the Stage 4 diagnosis ("Stage 4" is when a cancer goes from one organ to another, and in lymphoma, the "lymphatic system" is considered the organ or origination, and the bone is a secondary organ, in your case.  Are you receiving neulasta or other injections for white blood cell (WBC) regeneration?  These shots can be quite painful for the first day or two thereafter, and could account for you having felt so horrible after your first infusion.  If there is any good news at this point, it would be that you are not allergic to the meds.  Are you receiving rituxan ? It is a fifth drug sometimes added to abvd, depending on the type of cancer cells seen in your biopsy.  Occasionally, a doctor will order rituxan every OTHER infusion.  IF that is the case, and IF you got rituxan in the first infusion but not the second, that could account for a difference in how you felt, but this is pure speculation. You will have to ask your doc or infusion nurse to know for certain.

To directly answer the main question in your post, I will say that very generally, and this varies widely beteween individuals, the side-effects of chemo increase and intensify as one goes along, sort of as-if they are cumulative.  Hence, if you are going to get a lot of infusions, you could reasonably expect to feel worse later in treatment.  I am just answering the question, and there is no other way to talk about this stuff than to use honesty.  I do stress again: Everyone's experience is unique, although there  are common elements for most patients.

You are younger than many who have written here on abvd, and female.  Both relative youth and female sex are good things when having lymphoma -- they increase your survival statistics, and reduce the typical side-effects encountered (I was 53 at diagnosis, and the doc told my wife and I that my age and sex INCREASED my risk factors, which I have read elsewhere many times since). 

Pain meds: My recommendation? USE THEM !  I took many a bottle of loritab over my six months, and do not know if I could have made it without them. Many excellent anti-anxiety meds are available as well, and I used them daily also.  After my last infusion, I threw away the bottles, and never had any further desire for them. They were in no way addictive to me.

Please let us know how things are going.  This is totally doable, and lymphoma is among the most treatable af all cancers !

max

 

rescue911chick

Hi Julienne

I don't have any experience with what you're going through, but wanted to say hello and that I will add you to my prayers!

 

Sherry

Rocquie

Julienne

I have a different type of lymphoma and did a different chemo. I have NON-hodgkin lymphoma and I did 8 rounds of R-CHOP. Unlike most people I see post here about the subject, the effects of my chemo did NOT get worse or have a cumulative effect over time. My first chemo put me in the hospital for 2 weeks and I was inches from ICU. The 2nd chemo, I was again hospitalized but only for 5 days and I wasn't anywhere near as sick. From the 3rd chemo on, I didn't have much trouble (comparatively). I did lose my hair and as you know, that is quite traumatizing. And I experienced much fatigue and tiredness. By my last chemo, I had learned, really, how to deal with side-effects and take it all in stride. I had figured what works for me to prevent constipation, stop nausea, avoid infections, deal with the anxiety, and generally take care of myself.

Like you, my pain was gone after the first chemo.

Your term, "feeling poisoned" is a good one and one I have used many times.

You have found a good place to be and I welcome you here as I have been welcomed.

(((Hugs)))

Rocquie

 

 

 

 

jimwins

Welcome

Hi Julienne and welcome to the site.  I didn't have the same cancer/treatment as you but I will say the whole expereince wasn't as bad as I expected.  It was no picnic but you will get through it.  I'd say the fact that your pain (from the cancer) got better is a very good sign .  Yeah, chemo is poison but it's "poison on a mission" - kick cancer butt .  You will find wonderfully supportive folks here  and you are not alone!

Hugs and positive thoughts,

Jim

ellamenno

jimwins said:

Welcome

Hi Julienne and welcome to the site.  I didn't have the same cancer/treatment as you but I will say the whole expereince wasn't as bad as I expected.  It was no picnic but you will get through it.  I'd say the fact that your pain (from the cancer) got better is a very good sign .  Yeah, chemo is poison but it's "poison on a mission" - kick cancer butt .  You will find wonderfully supportive folks here  and you are not alone!

Hugs and positive thoughts,

Jim

Welcome

Hi Julienne. Welcome to the board though I'm sorry for the reason. I was diagnosed with stage 4B Hodgkins in 2001 (age 39). My treatment consisted of 12 rounds of MOPP/ABV. My 1st treatment, like yours, was very rough. Oncologist had to lower my doses for the next 6 months. I did find that it took me longer to recover with each successive treatment and I was ready to be done by the time the last one came. The 1st one was hardest in the sense that it made me quite physically sick and I was all ready to say I couldn't do it. I'm so glad I didn't give up. The rest of my treatments were difficult more in feeling extreme fatigue.

Please know that while it's no walk in the park, you can do this. If I can, anyone can.

Please keep us posted on your progress and if I can answer any questions you can post them here or pm me. Hang in there. It will get better.

Laurie

 

Julienne

Thank you for the support

I appreciate the support and kind words from everyone. Like I tell everyone... It could be worse, I could have leprosy. :-) I'm trying to keep a good humor about everything. It's good for me and it's good for everyone around me. My mother is having a hard time with this. She said that she has a hard time telling people because she just starts crying, but once she gets that initial bit out, she's ok. She told me that I make it very easy to talk about, which is what I want. I don't want people to treat me like I'm dying or anything like that. In my mind, this is something that happens to people and you just have to get the treatment and roll with it. In my mind I'll make it through this just fine.

I'm getting the six cycles also. They haven't given me anything for my white cell count. My doctor has taken me out of work for the remainder of my chemo because he said it's not worth the risk of infection. My doc hasn't talked about adding any drugs to the regimen and there's been no talk of radiation. I'm not in any pain now, so I'm not taking the pain killers. If I get a headache I just drink water and lay down because I'm not going to take a pain killer for that and my doc has said I can't take anything over the counter.

It's in my lumbar and thoracic vertebrae, hip, spleen, liver and nodes above and below the diaphram. They said they couldn't feel the nodes in my groin when I went in a week after my first treatment, so that's a good sign. At the time of my CT scan, which was in the middle of March, the larged of my nodes was 2.3 cm. This was a month before I started treatment, so I don't know how much bigger they might have gotten. I don't have crappy doctors, it was done about a week and a half before I had a vacation scheduled. I had a trip to England planned since October and I wasn't willing to give it up unless they gave me some really bad stats. I didn't know how aggressive lymphomas are and assumed I had been walking around with this for a lot longer than I had been. Either way, I decided that even if I could get year vouchers for my air fare and hotel, there's no guarantee that I'll be better in a year and worst case scenario I'd be dead or dying, so I stuck with my original plans.

Reading my scans, I don't think there was one particular trouble spot, so I don't think radiation is needed right now. I don't understand my PET scan results from last month. I'm guessing the numbers are all related to metabolic rates, but I didn't ask for details. My doc gave me an 80% chance before I started chemo, which is different from what I saw online. I figured that I didn't want to know any more details about the odds and I'm just going with the number he gave me. I keep hearing Han Solo's voice in my head saying "Never tell me the odds!" :-) He had said that another PET would be done after my second cycle, so I expect that will be done at the end of this month.

They gave me Xanax because I was a freaking out a bit before my first treatment. I'm ok when I'm not being poisoned through my chest.... That port line kinda freaks me out. It's handy as hell when it comes to blood draws because I don't have to worry about being stuck multiple times because they can't get a good vein (a regular problem of mine). I'm sure I'll get used to it.

They had to get the go ahead from the doc to do this past treatment because some blood numbers were off. It had to do with numbers related to either my segmented neutrophils, bands or lymphocytes, I can't remember which. I think the nurse told me those are related to the WBC number.  If this turns into a speed bump, I'm sure I'll hear about it this week as my next treatment is in three days.

I started to get a rash and some redness in my face after last week's treatment, but they both went away within a couple of days.  Doc told me to wear pants, long sleeves and a hat when I go outside.  The summer heat is going to start setting in here soon, so I'm probably just going to avoid going outside as much as possible because I'm a giant wuss when it comes to the heat.  I have had idiopathic hypersomnia for a couple of years now, so fatigue is nothing new to me, but what I felt after my first treatment was much worse than I expected. 

Bill_NC

Julienne said:

Thank you for the support

I appreciate the support and kind words from everyone. Like I tell everyone... It could be worse, I could have leprosy. :-) I'm trying to keep a good humor about everything. It's good for me and it's good for everyone around me. My mother is having a hard time with this. She said that she has a hard time telling people because she just starts crying, but once she gets that initial bit out, she's ok. She told me that I make it very easy to talk about, which is what I want. I don't want people to treat me like I'm dying or anything like that. In my mind, this is something that happens to people and you just have to get the treatment and roll with it. In my mind I'll make it through this just fine.

I'm getting the six cycles also. They haven't given me anything for my white cell count. My doctor has taken me out of work for the remainder of my chemo because he said it's not worth the risk of infection. My doc hasn't talked about adding any drugs to the regimen and there's been no talk of radiation. I'm not in any pain now, so I'm not taking the pain killers. If I get a headache I just drink water and lay down because I'm not going to take a pain killer for that and my doc has said I can't take anything over the counter.

It's in my lumbar and thoracic vertebrae, hip, spleen, liver and nodes above and below the diaphram. They said they couldn't feel the nodes in my groin when I went in a week after my first treatment, so that's a good sign. At the time of my CT scan, which was in the middle of March, the larged of my nodes was 2.3 cm. This was a month before I started treatment, so I don't know how much bigger they might have gotten. I don't have crappy doctors, it was done about a week and a half before I had a vacation scheduled. I had a trip to England planned since October and I wasn't willing to give it up unless they gave me some really bad stats. I didn't know how aggressive lymphomas are and assumed I had been walking around with this for a lot longer than I had been. Either way, I decided that even if I could get year vouchers for my air fare and hotel, there's no guarantee that I'll be better in a year and worst case scenario I'd be dead or dying, so I stuck with my original plans.

Reading my scans, I don't think there was one particular trouble spot, so I don't think radiation is needed right now. I don't understand my PET scan results from last month. I'm guessing the numbers are all related to metabolic rates, but I didn't ask for details. My doc gave me an 80% chance before I started chemo, which is different from what I saw online. I figured that I didn't want to know any more details about the odds and I'm just going with the number he gave me. I keep hearing Han Solo's voice in my head saying "Never tell me the odds!" :-) He had said that another PET would be done after my second cycle, so I expect that will be done at the end of this month.

They gave me Xanax because I was a freaking out a bit before my first treatment. I'm ok when I'm not being poisoned through my chest.... That port line kinda freaks me out. It's handy as hell when it comes to blood draws because I don't have to worry about being stuck multiple times because they can't get a good vein (a regular problem of mine). I'm sure I'll get used to it.

They had to get the go ahead from the doc to do this past treatment because some blood numbers were off. It had to do with numbers related to either my segmented neutrophils, bands or lymphocytes, I can't remember which. I think the nurse told me those are related to the WBC number.  If this turns into a speed bump, I'm sure I'll hear about it this week as my next treatment is in three days.

I started to get a rash and some redness in my face after last week's treatment, but they both went away within a couple of days.  Doc told me to wear pants, long sleeves and a hat when I go outside.  The summer heat is going to start setting in here soon, so I'm probably just going to avoid going outside as much as possible because I'm a giant wuss when it comes to the heat.  I have had idiopathic hypersomnia for a couple of years now, so fatigue is nothing new to me, but what I felt after my first treatment was much worse than I expected. 

Wish you all the best...

Just like Max; I have the same Hodgkin's Lymphoma at the same stage and type but unlike Max my oncologist refuses to add rituxan to my treatment, and still don’t understand why. I believe all Hodgkin's Lymphoma gets ABVD in stage 2,3, and 4. I was diagnosed back in January and started in February. You may be able to search one of my posts where I said “ABVD 1 down and eleven Togo”. Last Wednesday I finished my number 8 treatment out of 12, and I am going for my 3rd PET scan next week. My 2^nd PET scan after my fourth treatment shows decrease in size of 50-60%. Hoping for the best on my 3^rd scan if GOD will. I also take 2 shots every other week to increase white blood cells. I am still working full time and can’t wait to get back to my normal life. So hang in there, you came to the best support group Google search can find. Wish you all the best.

Max Former Hodgkins Stage 3

Julienne said:

Thank you for the support

I appreciate the support and kind words from everyone. Like I tell everyone... It could be worse, I could have leprosy. :-) I'm trying to keep a good humor about everything. It's good for me and it's good for everyone around me. My mother is having a hard time with this. She said that she has a hard time telling people because she just starts crying, but once she gets that initial bit out, she's ok. She told me that I make it very easy to talk about, which is what I want. I don't want people to treat me like I'm dying or anything like that. In my mind, this is something that happens to people and you just have to get the treatment and roll with it. In my mind I'll make it through this just fine.

I'm getting the six cycles also. They haven't given me anything for my white cell count. My doctor has taken me out of work for the remainder of my chemo because he said it's not worth the risk of infection. My doc hasn't talked about adding any drugs to the regimen and there's been no talk of radiation. I'm not in any pain now, so I'm not taking the pain killers. If I get a headache I just drink water and lay down because I'm not going to take a pain killer for that and my doc has said I can't take anything over the counter.

It's in my lumbar and thoracic vertebrae, hip, spleen, liver and nodes above and below the diaphram. They said they couldn't feel the nodes in my groin when I went in a week after my first treatment, so that's a good sign. At the time of my CT scan, which was in the middle of March, the larged of my nodes was 2.3 cm. This was a month before I started treatment, so I don't know how much bigger they might have gotten. I don't have crappy doctors, it was done about a week and a half before I had a vacation scheduled. I had a trip to England planned since October and I wasn't willing to give it up unless they gave me some really bad stats. I didn't know how aggressive lymphomas are and assumed I had been walking around with this for a lot longer than I had been. Either way, I decided that even if I could get year vouchers for my air fare and hotel, there's no guarantee that I'll be better in a year and worst case scenario I'd be dead or dying, so I stuck with my original plans.

Reading my scans, I don't think there was one particular trouble spot, so I don't think radiation is needed right now. I don't understand my PET scan results from last month. I'm guessing the numbers are all related to metabolic rates, but I didn't ask for details. My doc gave me an 80% chance before I started chemo, which is different from what I saw online. I figured that I didn't want to know any more details about the odds and I'm just going with the number he gave me. I keep hearing Han Solo's voice in my head saying "Never tell me the odds!" :-) He had said that another PET would be done after my second cycle, so I expect that will be done at the end of this month.

They gave me Xanax because I was a freaking out a bit before my first treatment. I'm ok when I'm not being poisoned through my chest.... That port line kinda freaks me out. It's handy as hell when it comes to blood draws because I don't have to worry about being stuck multiple times because they can't get a good vein (a regular problem of mine). I'm sure I'll get used to it.

They had to get the go ahead from the doc to do this past treatment because some blood numbers were off. It had to do with numbers related to either my segmented neutrophils, bands or lymphocytes, I can't remember which. I think the nurse told me those are related to the WBC number.  If this turns into a speed bump, I'm sure I'll hear about it this week as my next treatment is in three days.

I started to get a rash and some redness in my face after last week's treatment, but they both went away within a couple of days.  Doc told me to wear pants, long sleeves and a hat when I go outside.  The summer heat is going to start setting in here soon, so I'm probably just going to avoid going outside as much as possible because I'm a giant wuss when it comes to the heat.  I have had idiopathic hypersomnia for a couple of years now, so fatigue is nothing new to me, but what I felt after my first treatment was much worse than I expected. 

Update

Julienne,

In late stage HL, NOT receiving radiation is the norm -- what one would expect. Everything is done with chemo.  Six cycles of abvd is also what I would expect, given your stage IV diagnosis.

The doc may start WBC shots later, if necessary.  Neulasta is one of the most common.

A port is a blessing. I would never do long-term chemo without one, especially one that has vesicants (blister agents --Adriamycine and Vinblastine) included.

My worst symptoms from abvd (these are relatively common with that combination) were: 

(1) severe fatigue [sleeping 17 or so hours per day];  (2) loss of a sensation of taste, after about the 4th or 5th infusion; (3) severe neuropathy [numbness in the hands and feet, from the vinblastine]; (4) "Chemo Fog," or a loss of short term memory, and cognitive imparment.

Any given patient may encounter all, or some, or none of the above, but these are the most common with abvd.  Contact your doc fast if you start having significant shortness of breath or breathing problems, as Bleomycine is notorious for that, but mostly in older patients, or patients with pre-existing respritory problems.

Also, all or most of these drug side-effects eventually reduce, or totally go away, after treatment ends. I regained my sense of taste completely. I do still have significant fatigue and numbness four years out after treatment, however.  Hair retrurns completely in virtually all patients within two months or less after treatment.

Regarding redness in the face:  Eat crushed ICE when you receive Adriamycine ( the "red devil," which causes reddish urine). This will also reduce the possibility of blisters in the mouth/gums.

max 

krisr

Each tme was different

My son had HL IIIB and had six cyles of ABVD COPP two weeks on and two weeks off folowed by 23 radiation treatments.  The first month was bad and he ended up hospitalized for a week due to an infection.  We were scared that was the way it was going to be each time.  That was not the case.  Not to say that it easy but some months were better than others.  He had severe mucositis (which is what put him in the hospital the first time) for the entire treatment.  He had a lot of bone and joint pain - I can't remember which drug causes that and was given oxycodone but he said it didn't begin to touch it.  Sometimes soaking in a hot tub helped.  Stay strong. 

GalacDad

How much worse

Julienne

As with the others, I am glad to see you have found this site. I t is full of good people and well wishers who will help out the best that we can.

My Onc refered to ABVD as chemical warfare, and if your nurse gowned and gloved like mine did you know this is some nasty stuff being introduced to us. Each of us ends up with differnt effects of this treatment, even the Docs cannot come to a concensus of what is "normal" for a patient to go through. I was diagnoised as a HL 2B and given 4 rounds of ABVD and 17 straight days of Rads after. I was good until round 4 kicked in, lots of fatigue, loss of taste, bone pain from the shots to keep up the white blood cells. Neuropathy came later and is something I still deal with 5 yrs later. Stay as active as yoou can, rest often. Eat well when able.

Also remember that this will lower your bodies ability to fight off infections, so be cafeful with those around you, you might become more susceptable to a secondary illness. My Docs had told me to report to an ER if my temp had gone above 100.1f. Made for some difficult decisions at work, especially when co-workers are coming in with a "bug" or let you know that thier kids are home with some school "plague" or chicken pox. I ended up with a good case of shingles around the same time 3 of my co-workers were talking about thier kids chicken pox outbreaks. You do not need to isolate yourself, just be aware and be careful.

This ordeal will get better, give it time. Write us as often as you can

Dave

Joemory21

Hi

glad you found us but sorry you are here. Im doing r-ABVD and for me the first round was no big deal but as it goes on im more tired.  Your doctor will give you better odds than you find online because they are getting better at kicking cancers **** every day and lots of the reports you can read online  are a few years old. 

Best of luck 

jonathan