Life Post Treatment

Hi everybody,

I am sure this topic has been beaten to death on this forum, but i am recently post treatment with chemo and radiation and trying to start a life cancer-free.
i was "officially" diagnosed early june and finished treatment at the end of august;i was stage IIa. post chemo (2 cycles ABVD) PET showed no evidence of residual disease and i had 10 days of radiation (20 Gy).
i am now nervous about relapse and reoccurance while i should be focusing on the positive and moving forward. i have days where i poke and prod and think every little ache or pain is cancer again. my hair hasn't even grown back and i have started to worry like this.... i know that a certain about of worry is normal and that the worry will never completely go away, but anything that anybody can share about their experience is appreciated.
thanks

While I look forward to hearing others' responses to this post, I'll merely add that your anxiety level should go down over time. Your treatment protocol was influenced by the German Hodgkins Study Group's NEJM study, is that correct? Can you tell me how that came about?

First, where were you treated?
Then, did you bring the study to your doctors, or did they bring it up, and what kind of discussion did you have about it?

Ross

Try to stay positive and pray alot. Hang in there ok.

my treatment took place at MSKCC in new york. i first heard of the study abstract from a radiation oncologist (not associated with MSK) that i had a consultation with at diagnosis. oddly enough this MD was not planning on following those guidelines had i gone to him for treatment. i went for a second opinion at MSK and again was told about the german study. i chose to obtain the radiation segment of my treatment with this MD. My medical oncologist was notified that we were going to follow this course of treatment as long as my treatment response progessed as expected.
From my understanding there is going to be a shift in paradigm regarding the treatment of early stage HL to "less is more"; i.e. less treatment.
From what i was told by my MD, i would be spared the brunt of the nasty side effects of the chemo and radiation (eg. total hair loss, potential toxicity from the bleo and adria etc.). trust me though i had enough of the side effects even with just 2 cycles of chemo and the lower dose radiation!
if anybody else wants more info let me know.
Randy

Randy-
Good to hear. I've actually been touting that study since it was first presented at the American Society of Hematology meeting last December as an abstract, and was very pleased to see it published in the NEJM last month.

It does indeed indicate, if not a paradigm shift, at least a potentially practice-changing direction, although some doctors don't think the cohort was big enough or that the lasting effects are understood well enough. Nonetheless, it's starting to make an impact. the authors of the study, the German Hodgkins Study Group, is the leading HL study group in the world, and they have been for many years, meaning that it's very difficult for anyone to ignore their work.

While the lower chemo doses and lower radiation could indeed spare you from the typical side effects of those treatments (i would imagine that some people will still, even on those doses, experience them), the real key to the study-- strike that, the true paradigm shift that the study represents is this: for once, cancer researchers are starting to think beyond today, beyond right now. Cancer is normally so desperate that everyone- patients, doctors- accept the curative potential of today's treatments even if it means heart or lung toxicity, or secondary cancers, 20 years from now. In cancer no one worries about 20 years from now, there's too much at stake right now.

In effect, this study is actually forward-thinking. By cutting down on the amount of chemo and radiation received-- and NOT compromising your treatment -- this new standard significantly reduces your risk of developing cardiopulmonary toxicity, for instance, and it seriously cuts the risk of developing a non-Hogkin lymphoma many years from now--- both of which are believed to be caused by chemo and radiation.

This is how far Hodgkins research has come in the last 40-50 years. Just that long ago it was literally a death sentence. Today it's the most studied cancer in the world, and it has some of the best cure rates of any cancer. So researchers are starting to look ahead.

Ross

ross,
i totally agree with you. i also personally felt that the study chort was large enough and the patients were followed for long enough that i felt comfortable accepting the course of treatment recommended to me.
also knowing that a very well-known and respected MD at one of the world's leading cancer centers was also confident enough make me feel comfortable. don't get me wrong though, there is also that fear hidden inside that pops up to torment me every now and then to make me worry that maybe i should have done more treatment.
however, i do not feel that the anxiety that i feel right now is mainly due to my treatment regimen; i'd feel this way regardless....
also don't get me wrong; i did experience side effects from the chemo and radiation. i lost 75% of my hair and still have the skin irritation and muscle/tissue inflammation from the radiation.

Fight2, you may want to look at this. It is not the post I wanted, but is a good starting point.

I was worrying that my 8 ABVD and 14 low dose RT were not enough for me (stage 2A)... I guess it is O.K. although my PET after chemo showed a little activity on the mediastine but below 2.5

Mimmi,

We all become a little more expert on things we would rather never know about. I had never heard the word mediastinum before mine was invaded, and the numbers we are given mean nothing at first. Luckily, we have doctors to interpret for us. It does look as though the effects of the treatment are being understood more completely, and here's hoping you have finished with HL.

And nw_nyc

The same wish to you. Every day that passes increases the chance that you will not relapse. Sure, the nagging doubt remains, to be got out of the cupboard occasionally, but you will soon put it away again. The turning point comes when you catch a cold and think "I have a cold", rather than "Has my Hodgkins come back?". The medical folks will watch you like hawks in the early days.

Hi Randy, Hi I'm Janvi, living in Dubai, my sister has been detected with Hodgkin's lymphoma stage 3 type B, & we are in a shock, frustrated, insecured, & I would want to get maximum information, if you can help me. We have planned to take her to New york to undergo treatment in Sloan Kettering, if you can advise how long is this treatment, what kind of emotional support has to be provided. My Sister is not aware so far of her condition, she's 18 year old, I'm scared about her reaction as she had been suffering from symptoms like itchy skin, night sweats, cough & weigh loss for more than 6 months now, and she keeps feeling "why I have to go through all this", but we never thought something worse happening, we only thought it was some skin allergy and she's also of the same impression.

Also if you can help me in providing approximate financial expense like approximate cost of 1 chemotherapy, and how many will she have to undergo in that stage. Also we are seeking for financial help, if you can provide us details of Cancer trust supporting Lymphoma Children as we do not have insurance.

Janvi,

I'm sorry to hear about your sister. It is a big hit, and will not get better without medical intervention. The good news is that the treatment is very effective.

I am in Britain, and have no idea of costs, nor of funding. The treatment regimen is the same wherever,. I had six cycles of chemotherapy, 12 doses in all, in a fortnightly cycle. That took 6 months in all. I then had radiotherapy each day for a month. So from start to finish is several months, plus monitoring afterwards. There have been studies suggesting shorter treatments may be just as effective, but that's for a doctor to explain.

As for emotional support, I had friends and family to rely on. I needed no more, although there is no shortage of support available here, through the Lymphoma society, Macmillan nurses, and probably more besides.. I also had as much information as I needed about what was happening, what the chances were, and everything else. The medical staff were very good, very caring, and told me everything. To be honest, finding out the diagnosis was a relief, because I had been ill for 4 months, getting worse, and it was good to know we had the reason, and could get on with mending it.

I hope this helps as a start. You will find this forum very helpful. Most people on it have been through Hodgkins, and can explain from experience.

Tony

Hi Tony: Thank you for your kind words... I started radiation and so far it has been OK although I am feeling a little of the expected side effects. I hope it doesn't get too bad . I talked to my radio oncologist, he seems to be very experienced and he spends good time explaining things (unlike my oncologist).
He explained that he considers my last PET scan was clear and thinks that 14 sessions will be enough. He also mentioned I will be getting 23.5 gy instead of 30 gy. He said that right now most places are treating with 20-25 gy . I off course have no idea about this but I trust him and get relief to see that he is so optimistic and absolutely love when he says I'll be OK.... I hope very soon I become an official member of the "cancer free" club :)

Hi Janvi: It seems to me that the treatment for Hodgkin's is very standard worldwide (at least the first line of treatment) so I was wondering if your sister could be treated in your country... this could save money but also she'll have family and friends giving support. and you can always come to the USA if you need a second opinion for example.
In case you decide to come, I don't know about the cost of each chemo infusion but I know my PET scan was seven thousand dollars each ( I have had 2 so far) and each Neulasta shot (one after each chemo) was also seven thousand so treatment can get very expensive. I don't know if there is any kind of financial help but you can ask a social worker at your local hospital and see if they have any kind of conections with USA hospitals.
I wish your sister good luck, I know getting this kind of news is hard but HL is very treatable and it has a very high cure rate...so don't loose hope.

Mimmi,

Glad to hear you are coping with the rads. There is little sensation, but you may find a suntan builds up both sides of your body in the exact shape of the radiation beam. This can get dry and itchy. I recommend aqueous cream, rubbed in both sides after each treatment, and any other time you think may help. Better still, have someone good=looking rub it in.