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Hodgkin’s Lymphoma

Hodgkin’s Lymphoma

Posted by MayQ on Dec 26, 2020 7:53 pm

Hi,

I have recently been diagnosed with Hodgkin’s Lymphoma stage 2A and I start Treatment in January - I’m 40 yrs and being treated in Toronto. I am looking to possibly speak with someone who has gone through treatment in Toronto with the same diagnosis to get a better understanding of the effects of chemo especially after the first chemo treatment. I am very anxious about it as my experience with chemo was with a parent 20 yrs ago and was a very bad one. I would like to prepare myself and get any information I can from people who have actually gone through what I am about to begin.

thank you very much in advance 

Re: Hodgkin’s Lymphoma

Posted by CentralAB on Dec 27, 2020 6:39 pm

Hello MayQ‍  Thank you for dropping in here and for sharing a bit of your story. I am sorry to hear of your diagnoses, but I thought I would offer a short comment that might be of interest to you. I have a young nephew, about ten yrs younger than you who was diagnosed with HL several years ago. I am not very knowledgable on HL but I wanted to let you know that he did go through treatments and everything is good now, so my hope is to just let you know that treatment can be very successful and I hope that your's will be too. others on this site with more knowledge/experience re HL will reply here soon, I am sure. It might be a good idea too, to try and arrange help for house hold chores, etc that you might need to find help for temporarily. Wishing you all the best.
________________ "there is always a little Light"

Re: Hodgkin’s Lymphoma

Posted by Whitelilies on Dec 27, 2020 6:42 pm

MayQ‍ Hello and welcome to our caring community site.

I will tag 2 other members, with similar journey, as yourself.
Thank you to:
ABA‍ 
amandawassink‍ 
Much appreciation, to our new member, to kindly share.....

Regards
We are all here for you....listening.

Whitelilies

Re: Hodgkin’s Lymphoma

Posted by Brighty on Dec 27, 2020 6:43 pm

MayQ‍ welcome! I'm so sorry for what brings you here.     But we will support you every step of the way.     Everyone  reacts differently to chemo.    Many people  say it's not as bad at they thought.     The main tip I read here is to keep hydrated.    I don't know if you had the chance to poke around the site yet but I'd like you to meet ABA‍     
Happy_Hiker‍      SpeedyStill‍ 
amandawassink‍ .   They may be able to help you out.   You can also access  the cancer  info line at 1888 939 3333 to get some more info.     Do you have a good support system?    
Help is out there. All you have to do is reach out.

Re: Hodgkin’s Lymphoma

Posted by Essjay on Dec 27, 2020 6:46 pm

Hi MayQ‍ sorry to hear about your diagnosis.

Are you able to share what chemo you are on?

Many different cancers have similar chemo treatments so while we may not have the same disease someone may have had the same chemo treatment.

I too was very nervous about having chemo and how I would feel. My medical team helped me manage the side effects very well. They wanted to know everything and we spent far too much time talking about my bowels which were my biggest issue and something I really hate discussing, but we tried different things and made things as manageable as possible. 

I saw chemo as an investment in my future - I was 49 at diagnosis so like you still hoping for a long and healthy life after treatment.

How are you doing today?

Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Hodgkin’s Lymphoma

Posted by MayQ on Dec 27, 2020 6:50 pm

I’m going to be having ABDV. Worried about chest pain and heart palpitations 

Re: Hodgkin’s Lymphoma

Posted by amandawassink on Dec 27, 2020 7:15 pm

Hey MayQ‍ ,

my name is Amanda. I was treated for Hodgkin Lymphoma Stage 2B from January 2020-July 2020. I did ABVD. I’ve been in remission since March (after only 4 treatments). 

I did chemo in Fort McMurray, Alberta. But I moved to Ontario last month. I live west of Toronto (just outside Kitchener). 

like you, I experienced cancer for the first time with a parent as well. My mother had stomach cancer and she passed away when I was 14. I am 29 now and was diagnosed at 28. 

I read you’re worried about chest pain/palpitations with ABVD. 

the most toxic chemo drug in this protocol is the “B”. It is Bleomycin. This drug can cause lung toxicity (This did not happen to me). It is normally removed from the protocol after 4 treatments if you go into remission.  
the “A” in the protocol is Adriamycin/Doxorubicin. It will be the drug which causes any cardiotoxicity. However, the doctors have tailored these drugs so perfectly that the chances of you experience any toxic side effects are rare unless you are given too much. Once you’ve reached a certain amount, the chances of toxicity increases. I developed PVCs after chemo (premature ventricular contractions), which I don’t think I had before chemo. But my doctor said I may have had them already, and didn’t notice them. A lot of healthy, regular people have PVCS and they are common. They feel like palpitations. I never experienced chest pain. 

the “V” is vinblastine. This drug is the one that caused the most issues for me. It is normal for people to experience some neuropathy in their hands and feet from this drug. Usually this resolves in time. However, I started losing motor control in my hands - I found it hard to button buttons, cut small vegetables, I was dropping more things. Then I was experiencing nerve issues in my ears and in my girly area. The doctors dropped this drug for me at treatment 11. This type of reaction I notice doesn’t happen to everyone. It’s not common. 

the “D” is Dacarbazine. It takes the longest to administer and if you will be using just an IV, it can burn the veins so the nurses either need to add more saline or slow down the drip or both. 

I am an open book. Please send me a private message and I’ll be soo happy to help you and answer any questions you may have.  

Re: Hodgkin’s Lymphoma

Posted by JustJan on Dec 27, 2020 7:18 pm

MayQ‍ welcome to the site and I hope you will find it helpful and supportive. Like others here I don’t have your type of cancer nor did I have the same chemo drugs as you will be getting. What I can tell you is that the management of chemo side effects has come a long way from 20 years ago. Your care team will be very helpful in getting you through chemo. I found it very beneficial to document my side effects as they occurred and what I did to help alleviate them. I took this with me to my chemo followup appointment.  I did this with every round of chemotherapy. The team worked with me to get combinations of things to help me as much as possible. You may notice that side effects are similar with each round. 

A few pieces of advice for you to help with chemo.
1) drink a lot of water the day of chemo and for a few days after each treatment to help flush your system.  You should
verify this with your care team in case for some reason you shouldn’t due to the type of chemo you are receiving
2) take medication as prescribed
3) stay ahead of constipation
4) ask who to call during and after business hours if you are having side effects that aren’t manageable

I know the thought of chemo really scared me but I didn’t find it as bad as I had imagined it would be. Know that we are here to support you. 


 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Hodgkin’s Lymphoma

Posted by JustJan on Dec 27, 2020 7:19 pm

MayQ‍ welcome to the site and I hope you will find it helpful and supportive. Like others here I don’t have your type of cancer nor did I have the same chemo drugs as you will be getting. What I can tell you is that the management of chemo side effects has come a long way from 20 years ago. Your care team will be very helpful in getting you through chemo. I found it very beneficial to document my side effects as they occurred and what I did to help alleviate them. I took this with me to my chemo followup appointment.  I did this with every round of chemotherapy. The team worked with me to get combinations of things to help me as much as possible. You may notice that side effects are similar with each round. 

A few pieces of advice for you to help with chemo.
1) drink a lot of water the day of chemo and for a few days after each treatment to help flush your system.  You should verify this with your care team in case for some reason you shouldn’t due to the type of chemo you are receiving
2) take medication as prescribed
3) stay ahead of constipation
4) ask who to call during and after business hours if you are having side effects that aren’t manageable

I know the thought of chemo really scared me but I didn’t find it as bad as I had imagined it would be. Know that we are here to support you. 


 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Hodgkin’s Lymphoma

Posted by MayQ on Dec 27, 2020 8:48 pm

Thank you for your responses. Did anyone eat or do anything that you found helped to minimize the side effects of chemo. 

what about having a pick put in? Did anyone have one or is this just an option? Are there benefits to having this instead of a regular Iv? They haven’t mentioned what I’m having and wondered how far ahead you have this put in?

thank your taking the time to respond. I really appreciate it🌸

Re: Hodgkin’s Lymphoma

Posted by Essjay on Dec 27, 2020 9:16 pm

A PICC line will definitely make the infusions easier. I had a port which was similar. It’s a line inserted to stay in for the duration of your chemo. It needs a bit of care which the nursing staff will provide, but much better than them inserting a needle into the back of your hand each time.

I had Adriamycin/doxorubicin and it knocked my taste buds out, I found citrus really helped with this. I drank hot lemon, ate citrus yoghurt, lots of oranges etc. I ate with bamboo cutlery to avoid the metallic taste. I had to drink lots to flush out the chemo. The antiemetics upset my digestive system and I suffered with headaches. The need for sleep was a shock - I slept 10 hours at least a night (although the dexamethasone messed up that the first few nights after chemo, plus I’d have a two hour nap each day...

You have some great advice from amandawassink‍ and JustJan‍ 

Hope it’s helping to talk.
Triple Negative Breast Cancer survivor since July 2018

Re: Hodgkin’s Lymphoma

Posted by Essjay on Dec 27, 2020 9:20 pm

MayQ‍ 

a couple of publications for you which may help

one about Hodgkins Lymphoma
https://www.cancer.ca/~/media/cancer.ca/CW/publications/Hodgkin%20lymphoma%20UYD/32046-1-NO.pdf

one about chemotherapy
https://www.cancer.ca/~/media/cancer.ca/CW/publications/Chemo%20and%20other%20drug%20therapies/32055-1-NO.pdf

And one about eating with cancer
https://www.cancer.ca/~/media/cancer.ca/CW/publications/Eating%20well%20when%20you%20have%20cancer/32062-1-NO.pdf
Triple Negative Breast Cancer survivor since July 2018

Re: Hodgkin’s Lymphoma

Posted by amandawassink on Dec 27, 2020 9:37 pm

MayQ‍ ,

The only way I can describe the taste of chemo is that I’m at the dentist and the doctor is drilling into my teeth and I can taste my teeth. Lol not quite the metallic taste people describe. 

Drink a TON of water. Even during your infusions. Just keep drinking water, Gatorade, etc whatever you like. Just. Keep. Drinking. And it do it for days after chemo too. If it tastes bad, experiment with adding lemons, limes, flavored water etc. 

as for food... I found the first 5 days after chemo my taste buds were way off. I love ketchup and HATED ketchup the first 5 days. But let me tell you once my taste buds came back I ate all the ketchup hahahah. Eat what tastes good. You are going to have cravings. Indulge, eat what feels and tastes good. 

TAKE YOUR MEDS. Listen to your doctor and nurses. You’ll probably have to take steroids and anti nausea meds. Do not skimp on them. They will help. Steroids are proven to reduce nausea, increase appetite and they actually help to kill lymphoma cells. 

as for the steroids... I found I didn’t sleep that great. But it gets easier a few days after chemo. Also the steroids make you HUNGRY. I ate like I was pregnant. Cravings and everything. Gained 30 lbs. but that’s healthier than losing weight. 

you’ll get constipated probably. Make sure to get a good laxative. 

I had an IV inserted each time. I dreaded it.... I didn’t like it and I bruised up. But my oncologist said since I’m young with plump, healthy veins, she didn’t want to do a PICC. You have to get a picc flushed every week. 
 

Re: Hodgkin’s Lymphoma

Posted by ABA on Dec 27, 2020 11:14 pm

Hello,
I will try to make my message short so not to overwhelm you. In addition to the great suggestions that have been posted I would like to add the importance of exercise during the treatments. I think what helped me a lot was my day walks, 3 a day and when I felt stronger I did heavier exercises. But walking is extremely important, though take it easy and listen to your body. Even when I felt tired, I would go for a short walk and then if needed take a nap. 
Sleeping is extremely important. Do not give up on your sleep hours.
Hydration is crucial as the chemo meds dehydrate your body. You need to drink at least 2 litres of water. Sip slowly otherwise it may trigger nausea. On the day of the treatment, before you get to the chit, drink a lot. The more water you drink the easier it will be to find the vein. I always asked nurses to bring me iced water, at least it did not taste like metallic.
Never hold the pee, as you need to get rid of the chemicals contained in  urine.
Eat dry prunes to help with the bowl movement. I would suggest to search various smoothies recepues to help with bowl movements. Walks help a lot as well therefore it is crucial to walk.
Ear light breakfast before the chemo, but ensure it contains protein. You don’t want to overload your stomach. Also, endure you take done snacks with you as you need to have food in your stomach to prevent nausea.
Do not apply nail polish during the chemo period. I did and it ruined my nails, especially the toes.
Also I would suggest a dentist visit before the chemo. I had a few infections came up during my treatment as my immune system was low and I did not bother to take care of it before the treatment. But it was a nightmare especially when you need a clearance from your oncologist to  deal with dental issues.
I strongly recommend to get the book called The Living Kitchen ( I bought it through the Amazon). It contains great meal suggestions I always made sure to prepare meals in advance for my family and myself as I was not able to cook a few days after the treatment.
Always ask questions. The staff at PMH is knowledgeable and they will always help.
I also had an oncologist nurse from the CarePath. My employer has an affiliation with them. Check with them if you can get connected with them.
Hope it helps.

I finished my treatment in October and am now recovering.

Ask your doctor to connect you with the dietitian and the social worker. Their service is great.

Re: Hodgkin’s Lymphoma

Posted by happyhiker1 on Dec 28, 2020 12:43 pm

MayQ‍  I had Hodgkin's back in 2010, ABVD for 6 months every two weeks.  The Bleo was thankfully removed after about 3 months, since I was having difficulty breathing, but I haven't detected any lingering lung effects from it today. Nor have I detected any cardio or other effects now, over 10 yrs later.  I can mention that certain foods that I found palatable during my chemo period are now associcated with it and I no longer have any desire to eat them.  Now 69 yrs,  I recently discovered I have developed osteoporosis in the spine and read that steroid use can lead to that, which I wonder is related to the steroids I was prescribed to handle the chemo...  I was diagnosed with breast cancer, stage 1, one year ago, but have no idea whether there is any relation with the Hodgkins and its treatment in my case, although I have read that once you have one cancer, you are at risk for another (sigh!).  But all in all, at the time, 6 months of chemo seemed an eternity but betw treatments I was able to function, go cross country skiing, etc and felt back to normal on a hiking trip in the Rockies the summer following treatments.
Best of luck to you!

Re: Hodgkin’s Lymphoma

Posted by SpeedyStill on Dec 29, 2020 7:45 pm

MayQ‍ 
My ex wife is a Nurse and she said 
​​​​"Don't compare yourself with anyone else".
We are all unique in our experience.
Getting imput from other members is important. You do not want to start this without knowing the various reactions.
Hey, nobody told me this am I weird that it is happening to me.
Now, I didn't have this Community when I had my treatments. Wish I did.
Now after all this time for me I am not quite as weird as I thought I was.
Yes there are short term and long term side effects but ask me today 10 years and 7 months later would I still do it
"Yes most certainly."
I had Non-Hodgkins Lymphoma with a stem cell treatment lined up if the Chemotherapy did not work.
I was very fortunate to have the Oncologist and the support to get me to the other side.
Talk to your Oncologist, I had a Portocath because my treatments were uncertain and they may have extended beyond the regular treatment cycle.
My Portocath also was left in 6 years because of the chance of recurrance.
Listen to your Oncologist
Listen to your body
Nutrition is important to rebuilding your blood for the next cycle
Your bowels will more than likely give you trouble. Mine did any by comments it is common.
There are as many nerves in your digestive system as in your brain.
And when you think about it all the different pipes, valves and timing.
it is a mystery to me.
Keep in mind that you a person of value and that your contributions to life is out there in the distance.
Happy  New Year
Speedystill 
 

Re: Hodgkin’s Lymphoma

Posted by Raguillo on Dec 30, 2020 3:07 am

Hi MayQ‍  I'm currently going through ABVD (completed cycle 3 today) for Hodgkins. I'm getting treatment at Juravinski hospital in Hamilton. 

so far I've been lucky to have had minor or at least easy to deal with side effects. 
I strongly agree with those that have said to stay hydrated - my nurse suggested 2 L of water a day and honestly it has made a huge difference when it comes to IV and blood work. I have finicky, delicate veins on a good day;  so the nurses use the small needles for me - I ask for them at this point. 

Eat as healthy as you can, but also listen to your body - chemo does weird things to your taste buds and if you are given steroids you will be hungry! 

I do get neuralgia in the form of pins and needles and restless legs.  I had shingles back in February before being diagnosed and was given gabapentin for that nerve pain. I find it very helpful for the neuralgia and my hematologist gave the ok to continue using it for now.

Other than that, I would say document your side effects, take your temperature and ask questions to your medical team. No question is too silly! 

Re: Hodgkin’s Lymphoma

Posted by SpeedyStill on Dec 30, 2020 1:20 pm

Raguillo‍ 
I have been on Gabapentin for a few years now and I know that it has helped for my nerve pain.
I however am not taking Cancer treatments.
Like you indicate the Oncologist okayed the use for you.
Drinking lots of water is also important for me.
When the nurse ends up pocking me several times I realize that the extra water was important.
Happy New Year 
Speedystill