Hey all! My name is Amber. My massage therapist found a lump on my nevk back in Oct. I have been bounced around and around and around from so many Dr's. I finally had a lymph node removed from my neck and I found out yesterday (on April fools day) that I have HL. I'm devastated. I have three small boys, im 36, my husband is set to deploy in two weeks. We're in the middle of moving. I'm so mad! I'm SO mad! I know God has a plan for me, but I just am so mad and SAD that his is what he has chose for me. I'm so clueless on what to expect, what to do, what to say. How do I tell my kids? I was told this over the phone by the receptionist. I was driving, with my kids in be car, when I found out I had Cancer. Please. Tell me this is going to be ok! Tell me we are all going to be ok! Please help me stop cryin and hurting. What should I do?
Does anyone know of an active Facebook page where we can get active support? I'm having a tough time with all this and could really use some company
Hey Babylove, yes there is a Facebook site for Hodgkin Lymphoma and I have found it to be a lot more active than this support-groups site (not knocking this site though as I still like it but it has a lot less posts). Search on Facebook for “Hodgkin’s Lymphoma Awareness” and you will find it. It is cool because they discuss a lot of topics relating to Hodgkin’s Lymphoma and have regular pictures and posts of people as they are getting treatment. Everyone there seems very positive and supportive too
Amber, This happens to be the most active support on the internet, for HL, unfortunately. I was diagnosed in November 2015. You were hit with it at a pretty inconvenient time, for sure, and to be given the news while you were driving really sucked. I had to deal with a move about 3 weeks after I was diagnosed, too, and because it was the end of the year and my insurance was changing I was stuck waiting on getting treatment until after January. You don't need to tell your kids you have Cancer (that is a scary word, since there are so many kinds). I have a 7 yr old son, and I told him that I had an illness that attacks my body and that I needed to have treatments to get rid of the illness. I let him know, in my case (because I didn't have any symptoms other than tiredness), that I was going to be a little more "sick" during the treatment, but ultimately I would get better...and so will you.
HL has an amazing "cure" rate! You will need to get the CT/PET Scan to determine your staging, to know how much treatment you will need to go through. Take it one step at a time.
Do you have any symptoms? Was it limited to your neck? Mine was only in my neck and I was just tired all the time (5 hours a day felt like 12 to my body). I was staged as 1a, and therefor required a smaller amount of treatment than someone with a higher stage or showing symptoms. I started my Chemo (ABVD - is what the combination of the drugs is called) in January and I finished in March. I am feeling great now. The one thing that I know, is that I needed my husband to help out with my son, while I was going through everything, because there are a few days when you feel really crummy after your chemo treatment (which is given every 2 weeks - 1 round or cycle is 2 treatments). Try to find that help for yourself, to be able to handle the kids, while you are going through this, to allow yourself to get better, because that is the most important thing, for your whole family. I am here for you, and there are a few others on this site that are very helpful and wonderful people. I would also recommend looking for some cancer counseling services, through a non-profit in your area. I live in West Los Angeles area, where I go to a place called Cancer Support Community, and that has helped me A LOT. - Chris
Thank you Chris. For the first time in days you made me smile and gave me a little hope. I don't have any symptoms at all, none. Other than the lump found on my neck and now I can feel swollen ones on my collar bone as well. At night I just sit awake and wonder if it's eating me alive while I sit and cry. Is that normal? I mean I just found out, so I'm just so scared. My boys know that something is up as I've been going to so many doctors and they've heard Cancer thrown around. I plan to sit them down and explain to them that everything will be ok and everyone will be fine. I just don't have all the answers myself. I have so many people telling me NOT to do chemo, that it causes me Cancer down the road. And to just do it the natural holistic way. It's like being pulled both ways. I feel like a yoyo at times.
@Babylove1015
I understand it must be a tough spot to be in with all this. But let’s just lay down some information.
Chemo is damaging but there are ways to make the most of chemo, while enhancing its elimination/detox from your body when its purpose has been served. There are also herbs that significantly improve chemo’s effectiveness and are very strongly anti-cancer. Personally, I don’t think western/conventional medicine has all the answers because the politics/money/ego really interfere with the medicine actually being a medicine.
Chemo agents have a half-life in the body. This means, they are their cancer killing for a limited time. Their toxicity, on the other hand, is much longer if a recipient doesn’t do anything about it. So many oncologists will argue to not take any herbal products bc it’ll interfere with the chemo… Well, IF you wanted to argue with them, then you could argue the detox of chemo agents who have served their purpose and are only circulating toxicity. You can google the half-life of various chemo drugs; they range from 3hrs to 72hrs, give or take…
Graviola is an herb that I think is worth considering. You’ll google it and find all this great info about it and then you’ll find a “negative”, side-effects. As someone who has a considerable amount of lab experience, these studies are inconclusive and not worth worrying about. They studied graviola on a nerves in a petri dish, not in a live animal. There are anecdotal references. Chemo’s side-effects go without mentioning. I’ve studied along with an acupuncturist/TCM herbalist that used Graviola in her formulas for cancer patients and it does work.
Graviola is a cell-growth regulator and, when used with chemo, it inhibits the cancer cells from pumping out the chemo, thereby enhancing chemo’s exposure to the cancer cells.
Aside from Graviola, I suggest checking out a acupucture/Chinese medicine doctor who has a practice in herbal medicine. Don’t goto an ND or any of these new kid on the block medical systems that are just trying to figure things out. Chinese medicine has been doing this since before history was being recorded.
Depending on where you are, there are several practitioners that I know of who have extensive experience in treating/supporting those going through this… In Tampa, FL there’s Rene Ng. He works with Moffit Cancer Center down there. Then in Portland, OR, there’s a “Master” by the name of Heiner Fruhoff. There’s a 3 month wait to get into his clinic but if you have extenuating circumstances then things can be worked out.
If you have any questions then feel free to message me.
Please do not dismiss Chemo! That is the known way to cure this cancer, and most cancers. I only had to do 3 months of chemo, and I too found a lump at the top of my collar bone, just one month before I started treatments. If it is just in that area, and nowhere else it would be stage 1a (since you have no other symptoms), if it is in another area as well then it will be classified 2a. Both would be treated the same, and you will likely have 4 months of chemo, depending on how conservative your oncologist is. I highly recommend you get a prescription for Ativan (generic is Lorazapam), because that will help relieve the anxiety you are suffering right now. BTW, chemo does have possible harms to it, but leading to cancer of other types is not generally one of them. Radiation, on the other hand, could lead to possible other cancers, which is why it is generally only used for Stages 3 or above and for those with symptoms (b). You will be fine, and when it is all done, you will feel healthier than you have in a while, although with a lot less hair - lol.
@Sanguine108 - Please save your Graviola speech for people who are asking for alternatives, after treatment. Stop "selling" your herbal stuff to people who haven't yet had a chance to beat this stuff. The person you are responding to, in this thread, has only just been diagnosed and is too vulnerable for your herbal remedy. It won't cure her, and she deserves a life. Please stop preying on the most vulnerable!
@CCaldwell : Hi new friend. How are you? Did you have a good day? Are you excited about removing the PICC tomorrow? Yay! By the way I totally agree and think that the Graviola pusher needs to find a new forum.
Hi Again, Amber. One thing that might help is to really focus on your breathing. You are in shock and in fear and shallow breathing is usually the result. Taking long deep breaths will help to settle you.. I hope you are feeling better!
I guess I just need to accept what is and move on. It's so hard. I Don't go to doctors, im a Very healthy person, I don't even get sick with cold or flu. So, this is so detrimental to me. Like, how could this happen. It's all I ask myself.
Dear Sanguine, First of all this is a support group, not an unsolicited medical applications forum or web site. My oncologist emphatically told me " no " to acupuncture during my chemo treatment. It is too stimulating to the lymph system during this tenuous process. I really have to say that you have really become a nuisance and are not offering any support whats so ever so please do not send me any notes or emails. I have absolutely no idea why you are on this support forum but you have offered nothing helpful to me whats so ever. My medical protocol is my personal business and what I am doing to facilitate my recover is within that scope. I happen to be taking a medically tested Shitake Mushroom compound that has been used in Japan for over twenty years but you wouldn't hear me espousing here on this web site. This is for emotional support and you have offered nothing but unsolicited medical advice and by all accounts you are not a doctor and do not have the training to be talking out your butt hole the way you are.. Please do not send me any more notes or such. My energy is spent on health and healing and not dealing with you.. Sincerely, Paula P
@paulap293
I apologize, I’m just trying to offer help.
@CKarma - you haven't been around to see the other posts that they have made. They are not being supportive, they are just pushing an agenda. They are making it seem like it is medical advise and even posting fake stories on a Chemo Group to try to get people to use this Graviola, despite what "Western Medicine" says. This is just not the place for this stuff. We have tried to tell him and he gloms onto all the new desperate posts with his "information". We have respectfully asked him to stop, several times.
Word!!
Hi Hank, I am going in tomorrow at 10:30 am for my first session. My mom is flying in from Colorado tonight so she will be joining me for my first infusion. I am not going to lie, I am quite nervous. Do you feel run down even after three days of the chemo? You must be very happy that this was your last chemo infusion. I hope you feel better tomorrow!
Hey Paula, after chemo I normally feel really lethargic and run down for about one week, then during recovery week I start feeling closer to being normal again. For me, the side effects were worst after the first couple of chemo treatments (e.g. stomach pain, mouth sores, hiccups). In the later chemo treatments, the bad side effects seem to start getting milder or stopped completely. I now only have one chemo session remaining and the main side effect I deal with is the extreme tiredness.
Good luck with your first treatment, I remember being a bit nervous too for my first time. Afterwards, I realized it wasn’t as bad as I thought it was going to be. Allow yourself to get a lot of rest/sleep afterwards and I’m sure you will be able to get through it. By the way, did you end up getting a port or picc?
Paula - It is kind of cumulative, so after several treatments you feel a little more run down, than after your first couple treatments. The worst I had was after my 5th treatment, and it took 4-5 days after to feel "normal".
I have asked the Graviola scammer (look how many posts there are - he must do little else all day!) in rather less respectful terms, and have flagged the posts up for the mods. It isn't just rubbish, it is dangerous rubbish. If there was any truth in it, then it would be the mainstay of British cancer treatment, where our doctors don't get paid by piecework and money is always short.
Cancer Research UK has reported some research which does show that graviola kills some types of liver and breast cancer cells in laboratory experiments. Like many herbs, fruits, fungi, and bacteria from the natural world, it may one day form a part of a cancer drug, and will be subjected to the rigorous testing regime that all new drugs go through. For every successful drug, a thousand go down the drain, and for the moment, no research has been carried out in real conditions. There is no evidence to suggest that graviola alone will cure cancer.
Back to the real business of this support group - Amber, Hodgkins is no respecter of health, nor age, sex, nor beauty for that matter. Being young and healthy does help you deal with the treatment better than if you were badly out of sorts.
Your disease is what is usually described as "asymptomatic" - you had no symptoms of illness, and the lump was found by chance. That is a good thing. When you are staged, you can expect to be presented with a number between 1 and 4, plus a letter A to denote no symptoms. The numbers aren't so important to the outcome as in many cancers, as all stages are treatable.
The standard chemotherapy has been around for a lot of years, and much recent research has been into determining the best dosage. The answer seems to be that "less is more" and that lower doses in the form of fewer treatments can be just as effective. Your oncologist will know all about this.
A lot of people advocate refusal of chemo and use of alternative natural medicine. Ask if it cured their cancer - you may find that most are armchair experts who google things for answers. Eating well, especially with plenty of fresh fruit and vegetables, will never do anything but help you get better, but enormous amounts of anything or taking things like extracts of herbs that may have a powerful effect can be counterproductive. Many drugs are made from natural things - Hippocrates prescribed willow bark for headaches more than 2400 years ago, and aspirin is the active ingredient, isolated once science was able to do so. Quinine comes from the bark of the cinchona tree. Adriamycin, the A in ABVD chemotherapy, was developed from a bacteria found in soil in a specific part of Italy. They all have a natural origin, like bananas or parsley, both of which can be dangerous in some circumstances. Before taking anything as a supplement, check first with your doctor that it won't interfere with your medication. You want it to work, so you can get back to normal ASAP!