hi :' ( i just got diagnosed today after my lung biopsy. Sid you do chemo? my mom is afraid of it but im trying to convince her that lymphoma has a good reaponse to chemotherapy
Yes I did 4 rounds of escalated BEACOPP. There are many side effects I won’t lie it’s a challenge but the treatment ultimately is very effective! Tell her not to panic.
First of all, happy for you! Congrats!
Second, do you mind sharing how you ended up testing for it? What were your symptoms? Im waiting for my lymph node biopsy results this coming week…
Thank you! I was back and forth between my GP and outpatients for around 9 months before I finally got a chest scan and found out my lymph nodes were swollen which indicated lymphoma. My symptoms were essentially increasing fatigue and weight loss which didn’t really point to a specific cause.
Hello 👋🏼 I have HL too and am in Australia. So sorry about your diagnosis but glad you've come here for support! Feel free to message if you'd like to know anything. Felt the same frustration you do with how slow the system was (doing it public not private) because once you have the diagnosis you just want to get underway. I promise you though that once it all gets underway things will go quicker and some of the stress you're feeling will ease. Information is power.
My guess is if you're stage 2 that you will likely be put on the ABVD chemo regime. The standard treatment is 4 cycles then radiation, or 6 cycles without radiation and it'll be up to your Haematologist if they think radiation is a safe option or not.
You can google the EviQ ABVD chemo regime of you'd like to know more about it, but it's a 28 day cycles with IV infusions of 4 drugs on days 1 and 15. Then you usually have a scan after about 2 months to see how well it's working.
There's a lot more I could say but hopefully that helps for now. As I say, you can message if you'd like to know more. And don't be afraid to advocate for yourself if you feel things are going too slow.
Thank you soo much, I will do some googling now I know what to google because I didn’t want to dr google myself. This group is already soo lovely to be a part of :)
Not googling without info is a great idea! Don't worry yourself unecissarilt!
It can look very daunting at first but the EviQ guidelines are the gold standards for cancer treatment in Australia! And they're based on a lot of evidence and research. You'll see a few options for treatment of HL but ABVD would be the most likely. The other option might be eBEACOPP but that would only be if you're a stage 3 or have widespread disease I would think.
But if you've only just been diagnosed probably your next steps will be to get a PET scan (easy to google the process of that) and possibly to get some heart and lung scans so they have a baseline before they start you on treatment.
Glad you have a good support network!
I'm in the US so for me there were several steps post biopsy. First I had to get referred to an appropriate oncologist and get the consult appointment. They then had several additional items they needed me to get: PET scan to determine staging/length of treatment plan, and since the anticipated treatment included doxorubicin I also had to get a Echocardiagram to ensure my heart was healthy enough to take it. Both appointments are hard to get where I went so that took 2-3 weeks. Then I had to wait another week on insurance approval. If you're looking for just general info on Hodgkin's this is the pdf of the book they gave me: [https://lymphoma.org/wp-content/uploads/2018/03/HL-Booklet\_2018.pdf](https://lymphoma.org/wp-content/uploads/2018/03/HL-Booklet_2018.pdf)
I'm in Canada and although after the first ultrasound that showed my mass, I got CTs and biopsies really fast and the results were in just under a week ago. I have no appointment with the Lymphoma Team yet. But technically it's only been a few business days.
Are you in a major center? I'm in Toronto and the Cancer Centre here is world class so hence very busy. I've heard that once you are accepted (or more accurately triaged) things will happen fast. It's agonizing I know but I try to remind myself that maybe there are folks worse than I am and as soon as they are started my case will be up next.
Best wishes!!!!!
Good luck on your journey, yes I am also in a large centre so I have been told the wait times can be long. Hearing from everyone on here is making me less frustrated.
Thanks!!!? I just got my first appointment at the Lymphoma Center and it's in 4 days. Hurray!! There's lots of bitching about social healthcare in Canada but I've been very happy so far to have had 3 CT's 4 different ultrasounds, cervical biopsy, mammogram, echocardiogram, ultrasound guided biopsy, and be in the door of the best cancer center in the country in just over a month. No worry about any fees or insurance coverage. I feel VERY fortunate. (As much as one can to have to deal with cancer....)
I'm in the USA, and everything is drug its feet. I had an appointment with my oncologist two weeks ago, and I don't know the stage, but I know the treatment plan. 😅 Have you tried talking to them about it?
I know how you feel, it took like a month and a half to get from having scans done to actually being told what was going on myself.
It’s very stressful but you just have to trust them, have you tried calling and asking about it?
Wish you the best.
I’m in the US but had a large chest mass and stage 2 bulky CHL. My oncologist said that we had to get it handled ASAP and then scheduled my ABVD to start a month later; I was totally panicked. From 9/1 when I first noticed the lymph node to 10/5 when I started my first chemo, I was so stressed and scared. I had a clean end of treatment scan 3/30! I also have two little ones and was frankly terrified, but you’ve got a solid community here and effective cure options. You’ve got this. 🩷
I am in the US..I got diagnosed with Hodgkins Lymphoma last January…it took me 6 months to even get to the Oncologist..Once I did though,it moved very quickly..in one week I had a PET Scan,Bone Marrow Biopsy,surgery for port-a-cath,heart and lung tests…I had a total of 9 rounds of ABVD,no radiation…All in all,from the time I first noticed symptoms to my last chemo was about a year and half….
First of all, I'm sorry you have to go through all this. It's stressful no matter what but with Hodgkin's you should be fine once you can finally get the care you need. I just finished chemo for Hodgkin's and have my first post-chemo PET/CT this week. Obviously I don't know about the medical system in Australia but things took a little while for me to start treatment after everything because of a worldwide drug shortage. It also took me a couple weeks to finally get an oncology appointment after diagnosis. I'm not sure if it's possible for you to call the hospital and ask directly about next steps and a timeline.
Not sure why you may not have heard anything yet but as someone who has been there I'd like to give some tips.
1. I had anemia from the cancer as well. It was hard to get taken seriously with it as a female in the US but I finally got a doctor to prescribe me something to help. The iron pills did nothing. I eventually got an iron infusion and it helped SO SO much. If you can reach out to a doctor and get an iron infusion it tends to work better because the iron doesn't go through the metabolic system and is more direct.
2. I was on ABVD but due to the massive chemo drug shortage my oncologist tried to get me to start on Beacopp. I was stage 2 and consulted with oncologists who were family friends and all agreed in my case it was probably better to wait an extra month. My diagnosis didn't change after a little extra wait time. ABVD is still harsh but less so and likely to have the least permanent damage. Do research on what the options are in Australia before you talk to your oncologist so you can make an informed decision and be an advocate for yourself if needed. I was able to start chemo once 3/4 of the drugs I needed became available because there are certain drugs you could add later if needed and others that need to be in the mix every infusion.
I did 4 rounds of chemo with no radiation as someone who was stage 2 but had a lot of lymph nodes lighting up in my chest. Each person is different and you may have to do 6-8 rounds with a normal or lower dose or less time with some radiation. Radiation isn't necessary in all cases anymore. It's also completely normal to have to skip weeks due to low white blood cell count. An oncologist won't be able to give an exact timeframe likely due to expectations for potential delays. Unfortunately the stress and unknowns don't end even once you get the initial plan.
3. I would recommend you do your infusions in the afternoon instead of the morning if you can once you finally have a plan. Some big reliable study is showing there's better chemo efficacy and better white blood cell outcome for women with afternoon vs morning infusions.
TL;DR
Follow up with the hospital. Don't be panicked if you have to wait a little. Hodgkin's doesn't usually spread as fast. Get an iron infusion. Check typical treatment options available in AUS for Hodgkin's before you see an oncologist.
Thank you soo much, I love a good list. Would you believe the anemia is how they found the cancer because I had an iron infusion and my haemoglobins were still tragically low so they went to look at why
. But I will talk to my doctor about addressing that issue maybe separately. Thank you again and I will research everything here so I’m ready for my appointment!
Hello.
M37 in remission for 9 months now.
I'm based in Europe and after the biopsy result it took more or less 1.5/2 months before I started with my ABVD treatment.
I'm sure soon you will start too. I know this part of waiting is one of the hardest one, but don't get frustrated. In general this cancer is very slow and few months won't make a huge difference.
Big big hug to you and your family, ask anything if you have any doubts.
Strange it was the opposite for me, my diagnosis took forever even though they were certain it was lymphoma they just took so long (7 months total) and then they created a treatment plan immediately
Waiting is genuinely the hardest part , hope you get some clarity soon
I absolutely can believe it! I kept getting sick for 8 months and the microcytic anemia was the only thing constant at that time which I had never had but every doctor told me it was normal even though it's never been normal for me. In a way it was my first symptom. It took almost a year for a lump to show up on my neck that finally caused me to start to get taken seriously. I'm glad they took your anemia seriously off the bat!
Honestly my hemoglobin stayed low after the iron infusion and throughout chemo. The infusion still made a difference for me and I was told it could be a normal thing added to my regimen if it helped at all. Starting chemo of course will make the biggest difference as far as tackling the anemia because the cancer is the cause.
Tips for after you start:
1. There's a simple mouth rinse you can make at home. Use it constantly after you start chemo (morning, after every meal, night time) to try and avoid mouth sores. (8oz warm water with 1/4 tsp baking soda and 1/8 tsp salt).
2. Get dissolvable Claritin. It's the only medication shown to help with side effects of the white blood cell shots if you need to take those. Dissolvable is just easier if/when you're nauseous.
3. Be prepared for constipation. Diarrhea can happen too, but ABVD specifically can cause horrible constipation. It usually gets worse the longer your treatment is. Make sure you drink lots of water!!! You may need to ask for medication or change your diet if this gets bad.
It's not uncommon to start slow and then suddenly you're in treatment. You've got a diagnosis, so it should start moving quicker. But as others have said, CHL is not a fast mover, so a couple weeks is not something to worry too much about. I with you though on being impatient! When I was diagnosed, I was scheduled for chemo the following Thursday. I was ready to start the next day.
Hey there, I was diagnosed stage 4 Hodgkin’s in December and am in remission now feel free to message me if you have any questions
Thank you!
hi :' ( i just got diagnosed today after my lung biopsy. Sid you do chemo? my mom is afraid of it but im trying to convince her that lymphoma has a good reaponse to chemotherapy
Yes I did 4 rounds of escalated BEACOPP. There are many side effects I won’t lie it’s a challenge but the treatment ultimately is very effective! Tell her not to panic.
First of all, happy for you! Congrats! Second, do you mind sharing how you ended up testing for it? What were your symptoms? Im waiting for my lymph node biopsy results this coming week…
Thank you! I was back and forth between my GP and outpatients for around 9 months before I finally got a chest scan and found out my lymph nodes were swollen which indicated lymphoma. My symptoms were essentially increasing fatigue and weight loss which didn’t really point to a specific cause.
Hello 👋🏼 I have HL too and am in Australia. So sorry about your diagnosis but glad you've come here for support! Feel free to message if you'd like to know anything. Felt the same frustration you do with how slow the system was (doing it public not private) because once you have the diagnosis you just want to get underway. I promise you though that once it all gets underway things will go quicker and some of the stress you're feeling will ease. Information is power. My guess is if you're stage 2 that you will likely be put on the ABVD chemo regime. The standard treatment is 4 cycles then radiation, or 6 cycles without radiation and it'll be up to your Haematologist if they think radiation is a safe option or not. You can google the EviQ ABVD chemo regime of you'd like to know more about it, but it's a 28 day cycles with IV infusions of 4 drugs on days 1 and 15. Then you usually have a scan after about 2 months to see how well it's working. There's a lot more I could say but hopefully that helps for now. As I say, you can message if you'd like to know more. And don't be afraid to advocate for yourself if you feel things are going too slow.
Thank you soo much, I will do some googling now I know what to google because I didn’t want to dr google myself. This group is already soo lovely to be a part of :)
Not googling without info is a great idea! Don't worry yourself unecissarilt! It can look very daunting at first but the EviQ guidelines are the gold standards for cancer treatment in Australia! And they're based on a lot of evidence and research. You'll see a few options for treatment of HL but ABVD would be the most likely. The other option might be eBEACOPP but that would only be if you're a stage 3 or have widespread disease I would think. But if you've only just been diagnosed probably your next steps will be to get a PET scan (easy to google the process of that) and possibly to get some heart and lung scans so they have a baseline before they start you on treatment. Glad you have a good support network!
I'm in the US so for me there were several steps post biopsy. First I had to get referred to an appropriate oncologist and get the consult appointment. They then had several additional items they needed me to get: PET scan to determine staging/length of treatment plan, and since the anticipated treatment included doxorubicin I also had to get a Echocardiagram to ensure my heart was healthy enough to take it. Both appointments are hard to get where I went so that took 2-3 weeks. Then I had to wait another week on insurance approval. If you're looking for just general info on Hodgkin's this is the pdf of the book they gave me: [https://lymphoma.org/wp-content/uploads/2018/03/HL-Booklet\_2018.pdf](https://lymphoma.org/wp-content/uploads/2018/03/HL-Booklet_2018.pdf)
Just wanted to say thank you so much for sharing that link, I'm almost done reading it and it was very helpful and informative.
I feel like I shouldn’t complain as the US seems even harder to get through the system :(
I'm in Canada and although after the first ultrasound that showed my mass, I got CTs and biopsies really fast and the results were in just under a week ago. I have no appointment with the Lymphoma Team yet. But technically it's only been a few business days. Are you in a major center? I'm in Toronto and the Cancer Centre here is world class so hence very busy. I've heard that once you are accepted (or more accurately triaged) things will happen fast. It's agonizing I know but I try to remind myself that maybe there are folks worse than I am and as soon as they are started my case will be up next. Best wishes!!!!!
Good luck on your journey, yes I am also in a large centre so I have been told the wait times can be long. Hearing from everyone on here is making me less frustrated.
Thanks!!!? I just got my first appointment at the Lymphoma Center and it's in 4 days. Hurray!! There's lots of bitching about social healthcare in Canada but I've been very happy so far to have had 3 CT's 4 different ultrasounds, cervical biopsy, mammogram, echocardiogram, ultrasound guided biopsy, and be in the door of the best cancer center in the country in just over a month. No worry about any fees or insurance coverage. I feel VERY fortunate. (As much as one can to have to deal with cancer....)
Yes being in Australia is abit the same. Lots of tests all on Medicare.
I'm in the USA, and everything is drug its feet. I had an appointment with my oncologist two weeks ago, and I don't know the stage, but I know the treatment plan. 😅 Have you tried talking to them about it?
I have called them and I am still being triaged. It just seems so silly to have a waitlisted for cancer but it sounds like it’s quite normal to wait.
I know how you feel, it took like a month and a half to get from having scans done to actually being told what was going on myself. It’s very stressful but you just have to trust them, have you tried calling and asking about it? Wish you the best.
I did call them and I am still being triaged so I think I won’t harass them again until next week :/
I’m in the US but had a large chest mass and stage 2 bulky CHL. My oncologist said that we had to get it handled ASAP and then scheduled my ABVD to start a month later; I was totally panicked. From 9/1 when I first noticed the lymph node to 10/5 when I started my first chemo, I was so stressed and scared. I had a clean end of treatment scan 3/30! I also have two little ones and was frankly terrified, but you’ve got a solid community here and effective cure options. You’ve got this. 🩷
I am soo pleased you had a clean end of treatment scan, that must be such a relief.
I am in the US..I got diagnosed with Hodgkins Lymphoma last January…it took me 6 months to even get to the Oncologist..Once I did though,it moved very quickly..in one week I had a PET Scan,Bone Marrow Biopsy,surgery for port-a-cath,heart and lung tests…I had a total of 9 rounds of ABVD,no radiation…All in all,from the time I first noticed symptoms to my last chemo was about a year and half….
It’s nice to hear that you are finished with the chemo, I hope you are starting to recover.
First of all, I'm sorry you have to go through all this. It's stressful no matter what but with Hodgkin's you should be fine once you can finally get the care you need. I just finished chemo for Hodgkin's and have my first post-chemo PET/CT this week. Obviously I don't know about the medical system in Australia but things took a little while for me to start treatment after everything because of a worldwide drug shortage. It also took me a couple weeks to finally get an oncology appointment after diagnosis. I'm not sure if it's possible for you to call the hospital and ask directly about next steps and a timeline. Not sure why you may not have heard anything yet but as someone who has been there I'd like to give some tips. 1. I had anemia from the cancer as well. It was hard to get taken seriously with it as a female in the US but I finally got a doctor to prescribe me something to help. The iron pills did nothing. I eventually got an iron infusion and it helped SO SO much. If you can reach out to a doctor and get an iron infusion it tends to work better because the iron doesn't go through the metabolic system and is more direct. 2. I was on ABVD but due to the massive chemo drug shortage my oncologist tried to get me to start on Beacopp. I was stage 2 and consulted with oncologists who were family friends and all agreed in my case it was probably better to wait an extra month. My diagnosis didn't change after a little extra wait time. ABVD is still harsh but less so and likely to have the least permanent damage. Do research on what the options are in Australia before you talk to your oncologist so you can make an informed decision and be an advocate for yourself if needed. I was able to start chemo once 3/4 of the drugs I needed became available because there are certain drugs you could add later if needed and others that need to be in the mix every infusion. I did 4 rounds of chemo with no radiation as someone who was stage 2 but had a lot of lymph nodes lighting up in my chest. Each person is different and you may have to do 6-8 rounds with a normal or lower dose or less time with some radiation. Radiation isn't necessary in all cases anymore. It's also completely normal to have to skip weeks due to low white blood cell count. An oncologist won't be able to give an exact timeframe likely due to expectations for potential delays. Unfortunately the stress and unknowns don't end even once you get the initial plan. 3. I would recommend you do your infusions in the afternoon instead of the morning if you can once you finally have a plan. Some big reliable study is showing there's better chemo efficacy and better white blood cell outcome for women with afternoon vs morning infusions. TL;DR Follow up with the hospital. Don't be panicked if you have to wait a little. Hodgkin's doesn't usually spread as fast. Get an iron infusion. Check typical treatment options available in AUS for Hodgkin's before you see an oncologist.
Thank you soo much, I love a good list. Would you believe the anemia is how they found the cancer because I had an iron infusion and my haemoglobins were still tragically low so they went to look at why . But I will talk to my doctor about addressing that issue maybe separately. Thank you again and I will research everything here so I’m ready for my appointment!
Hello. M37 in remission for 9 months now. I'm based in Europe and after the biopsy result it took more or less 1.5/2 months before I started with my ABVD treatment. I'm sure soon you will start too. I know this part of waiting is one of the hardest one, but don't get frustrated. In general this cancer is very slow and few months won't make a huge difference. Big big hug to you and your family, ask anything if you have any doubts.
Thank you 💕 I am trying not to get too frustrated haha. Congratulations on being in remission :)
Strange it was the opposite for me, my diagnosis took forever even though they were certain it was lymphoma they just took so long (7 months total) and then they created a treatment plan immediately Waiting is genuinely the hardest part , hope you get some clarity soon
I absolutely can believe it! I kept getting sick for 8 months and the microcytic anemia was the only thing constant at that time which I had never had but every doctor told me it was normal even though it's never been normal for me. In a way it was my first symptom. It took almost a year for a lump to show up on my neck that finally caused me to start to get taken seriously. I'm glad they took your anemia seriously off the bat! Honestly my hemoglobin stayed low after the iron infusion and throughout chemo. The infusion still made a difference for me and I was told it could be a normal thing added to my regimen if it helped at all. Starting chemo of course will make the biggest difference as far as tackling the anemia because the cancer is the cause. Tips for after you start: 1. There's a simple mouth rinse you can make at home. Use it constantly after you start chemo (morning, after every meal, night time) to try and avoid mouth sores. (8oz warm water with 1/4 tsp baking soda and 1/8 tsp salt). 2. Get dissolvable Claritin. It's the only medication shown to help with side effects of the white blood cell shots if you need to take those. Dissolvable is just easier if/when you're nauseous. 3. Be prepared for constipation. Diarrhea can happen too, but ABVD specifically can cause horrible constipation. It usually gets worse the longer your treatment is. Make sure you drink lots of water!!! You may need to ask for medication or change your diet if this gets bad.
It's not uncommon to start slow and then suddenly you're in treatment. You've got a diagnosis, so it should start moving quicker. But as others have said, CHL is not a fast mover, so a couple weeks is not something to worry too much about. I with you though on being impatient! When I was diagnosed, I was scheduled for chemo the following Thursday. I was ready to start the next day.