I was diagnosed with Hodgkins Lymphoma today after finding aI was diagnosed with Hodgkins Lymphoma today after finding

I was diagnosed with Hodgkins Lymphoma today after finding a hard bump in my armpit. I found this bump about eight months ago and kept going back to the doctor ( Kaiser P ) and was told it was probably nothing. Finally I went into my internist's office and said I was not leaving until he ordered me an ultra sound. After the Ultra Sound they ordered the biopsy and wallah.. was told today that I have this particular type of cancer. I have been crying all afternoon and am in a state of shock. I am 46 years old and am very active, taking kundalini yoga teacher training as we speak and eat a ton of fruits and veggies. Not sure how this happened?

1 Heart

Hi Paulap293,

There is no straightforward answer to your question about how this happened. In my case, one possibility was a drug I was taking for arthritis, although I hadn't been on it long. The other was pretty much just plain old bad luck - genetics can be a cruel business. Like you, I was mid-40s when it all started. Like you, I had a long wait until diagnosis, although in my case it was more to do with the disease hiding itself than a lack of will to investigate further. Unlike you, I was far from fit at the time.

Also unlike you, I have been through the treatment and come out the other side, like many on this site. I had surgery, chemotherapy then radiation therapy, finishing the treatment in November 2002. It has not come back since. The chances are that your outcome will be similar - this is one of the better understood cancers, and is treatable at all stages. Stick with the fruit and veg and stay fit, unless you are told to avoid something by a doctor. Stick with us, too, and ask any question.

Your doctor will "stage" you - there are four stages to Hodgkins, as there are in many cancers. I was a stage 3, meaning more than one site, and on both sides of my diaphragm. The treatment was chemotherapy once every two weeks - 12 times in my case, although it can be a lot fewer. Radiation was to mop up any residue in a mass on my lung and in my spleen. What you get will depend on the stage. What I will say is that the process was nothing like as bad as I had always imagined chemotherapy would be, although I was glad when it was over.

Tomorrow, hopefully, the shock will have subsided a little, enough to allow hope and determination to take hold. You will beat this, and will then be able to start Life: Part 2 - the best bit! Many years after I finished my treatment, I started writing the story of my experience with the Hodge. It isn't finished yet, although I will get around to that soon. It's a bit of a "warts and all" saga, but I have also included the humour (yes, there is time for that!) as well. If you think it may help, send me a private message. There is, before you ask, no charge.

Peace and love!

Tony

Hi Tony,
Thank you so much for the reply slash note. I just got back from the oncologist and learned quite a bit. She detected some enlarged lymph nodes in my neck which I had not noticed. I have a battery of tests to undergo. Friday is the worst the day of the bone marrow test. I was wondering if you perhaps could recommend whether I should take ex strength tylenol that day or go with the stronger stuff they suggest such as morphine? I would so much rather drive myself than have to arrange a ride etc. I also tend to get really nauseated with the pain pills like norco etc. I was wondering if you had the same procedure? I still have to go in for a ct scan, lung test, heart test etc. Then we meet again at the oncologist to determine what stage I am. Then I pretty much start Chemo therapy. I am still in the dis-belief stage. Have you had any damage to your organs from the chemo? How long did you take chemo? My doctor told me that I would probably take it once a week for six months. Not sure until we determine the stage of the cancer. It is allot to take in, considering I just found out about it yesterday. I am very happy that you are cancer free and doing so well!
Thank you for still being on the support web site and offering your kind words of wisdom.

Hi Paula,

I'm going to brag here - I had the bone marrow sample taken with only local anaesthetic. The guy was an expert, and injected the stuff as he was going in. I felt pressure, but no pain, and only a sore arse for a couple of days after. He reckons it is easier to deal with an alert and awake patient. It remains, though, the least fun I have ever had with my pants off.

I developed pulmonary fibrosis a month or two after finishing the treatment. That started with a chest infection. The doctor said it could be the surgery that triggered it, it could be the bleomycin in the chemo, it could be the radiation, it could be because I used to smoke (quit 10 years before Hodgkins) or it could some or all of the above, or none of them - just bad luck. He also told me I would quickly learn to cope with it. I did, and later learned to fly, so it isn't a life-controlling condition. If it is a complication of the treatment, it's a rare one - don't panic. I had no other complications, and I finished treatment in November 2002.

My chemo was ABVD, and was every two weeks. I had 6 cycles, meaning 12 doses, so 24 weeks in total. I would be very tired for a couple of days after each dose, and my taste buds went AWOL - everything tasted slightly metallic, and I lost my taste for strong hot curries. Everything returned to normal after the treatment finished. I did not lose my hair, not that I had much anyway. One thing to be aware of, one of the drugs (I think Adriamycin) turns your urine a bright red colour for the first couple of pees. This is as close as you get to a recreational effect, and can be alarming if no-one tells you first. Your chemo will involve a lot of fluid going into your veins, and it has to come out somewhere, so you will be in the treatment centre when it happens! Adriamycin is a trade name for Doxyrubin. It was isolated from soil samples in Italy in the 1950s, and was named after the adjacent Adriatic Sea. I sailed past it on a cruise, and have visited Italy several times, but have not been to see the place for myself - yet.

Mine was administered via a cannula inserted into the back of my hand each time. They started as close to my fingers as possible, then worked back. It ruins the veins, which proved tricky to find come the end, and I almost had to have a picc line. A Portacath seems popular now, especially in the US (I'm British), which is an implant through which the drugs are injected. It is removed after the last treatment. A session of chemo took about 3½ hours each time.

Batteries of tests are part of the drill. You will have at least a CT scan and x-rays, and maybe MRI or PET scans. If you do have a MRI, don't make the mistake I made, and go into the machine with all your bank and credit cards in your pocket. The data on the magnetic strips was wiped clean. I could still use them in shops as the chip was undamaged, but they wouldn't go into ATMs. These tests, along with biopsies and blood work and the like, will show the full extent of your illness, and they, as you say, away you go! After the first few poisonings, you will go back to the CT scanner to monitor how well it is working.

Don't take it too seriously, and it will soon be over. I first joined this group nearly 5 years ago, as there was nothing like it when I was ill, and I figured it would help people to learn from my mistakes, rather than make their own. I don't intend to go anywhere soon, although I don't sign in daily as I used to. As I said earlier, ask any question you like - if I don't know the answer, someone will.

Hi Tony, Thank you for the note. I appreciate all of your info. Tomorrow is the day for the carido
( heart test ) and the bone marrow test. She prescribed adavan for the anxiety for said test and then some other pain medication for the pain. The way she described the bone marrow thing, sounded barbaric. I wish she hadn't gone into details. Hopefully tomorrow will go smoothly. Did you work during your treatment? I have a business and have decided to not let my vendors know what is going on. I will most likely hire some additional hands to help service accounts as I am a broker to the natural products industry. I am still unsure of the stage that I am and was wondering what stage you were when you found out that you had cancer? I was also wondering if you told everyone or if you kept it to yourself and only told close friends? I was told by the doctor that I would probably loose my hair which has been one of the more horrifying prospects ( I know so vain ) but my hair is one of my " things " Any how I can not tell you how much I appreciate your info and your insights.. Thank you very much and have a great night!

Hi Paula,

In one sense the bone marrow test was a bit savage - like a good mediaeval torturer, the doctor showed me the instruments before starting work. In this case, it was a very long needle fitted to a syringe. It was honestly no great shakes, although I may have struck lucky and got the best guy for the job.

Yes, I did work. In fact, I had been off work for nearly 6 months before diagnosis. After the first treatment, I realised I was bored, and figured that if I was well enough to be bored, I was well enough to work. I had chemo on Wednesdays, then took Thursday, Friday and the weekend off.

I was a stage 3BE. I didn't keep it to myself - I am one for telling it the way it is, which led to some funny incidents. I didn't lose my hair - I was a slaphead anyway. What was left thinned a bit, but generally stayed put. A friend of mine who is younger than me, as well as more female and much more beautiful than me, recently had chemo. She got to wear the hat with the chilled water circulating during treatment. It reduces the blood flow to the scalp and hence cuts the amount of drug hitting the follicles. She came out of it with a full head of hair, still looking the full million dollars. Is this available to you?

I had a ECG done by a guy who was clearly bored. The paper came out of the machine. He ripped it off, held it up, examined it, then shouted "Oh my god!!" Then he turned it the other way up and said "Silly me - normal". I appreciate a bit of comedy, even if it did nearly give me an ironic heart attack.

All the best for tomorrow, or is it today now?

@Tony K ,
Hello Tony, I hope you are doing well tonight! I had the bone marrow test ( oh joy ) yesterday. It went ok, due primarily to the fact that I was heavily sedated on narcotics. The next test is on Monday for a CT Pelvis or Abdomen exam. Today my friends and I went on a boat ride around the bay, unfortunately I had a little break down when we got back. I am just having a hard time understanding why this is happening and trying to figure out how my life is ever going to be normal again. My boyfriend wants me to keep going as normal as possible but I just want to stay at home and cry. I am feeling very sorry for myself and scared about the impending tests and chemo. On a positive note, I bought a bunch of new " chemo " outfits on line. At least I can try to look chic while I am having poison injected into my veins. I did have one glass of wine today and I feel like it did not agree with me and lowered my vibration so I won’t do that again. I am deciding about canceling my trip to Joshua Tree next week for Sat Nam Fest with fellow Yogis where we take lots of classes, sing, dance and over all have a great time. I just don’t feel i have the mental or spiritual energy right now. Sorry to be such a downer tonight. I hope your having a great weekend and I really appreciate staying in contact with you as I feel very alone right now even though I have people who love me but they just don’t understand what I am going through. I just feel so young to be having these issues! I have had so much to look forward to until now. Any how my personal email is [email protected] if you ever want to chat through regular email. Thanks and have a great night!

While I have not been diagnosed with anything, I am sorry for this. You can fight this. Be strong. Pray on Lord. Today is Good Friday. You can beat this. The will to live combined with Christ will always prevail.

@stressedguy
Hello Stressedguy,
Thank You for the kind words and encouragement. I do believe in God and am trying really hard to connect with his energy so he can guide my thinking in a more positive way. Have a great night!

Hi Paula,

The good news about the bone marrow test is that it is in the past. You should have the results soon. Negative is good news, positive isn't terrible news. That and the CT should be enough for your oncologist to determine your stage, then it's time to rock and roll!

Keeping normal is a good thing to do, but first you need to decide what is normal. Faking it and pretending that all is well will do you no good because of the effort you will have to put into the act, whilst all the time thinking about this monster that is stalking you. You will fail and fall down anyway, so allow yourself a bit of time for the emotion, be it anger, fear, hatred - whatever. Being a family man, my first reaction was to think I had failed everybody - like I intended to get Hodgkins. It's not logical, and I'm fairly stoic, but it took a few days to get over. All that said, I experienced the reactions of others, which ranged from talking about anything else to shock and tears - not what I wanted, someone I needed to console - to sheer avoidance. One of the best things a friend did, when I knew I had cancer but not which and thought I was done for, was to take me out to see a movie. Everyone was anxious about my illness, one man thought I might like to go to the cinema. Tell your friends that you are ill, you will be treated, it is scary so excuse me if I go a bit whatever whenever, but I remain Paula and would like to do something normal occasionally. I do, however, reserve the right to opt out should I, rationally or otherwise, choose to do so, with no right of appeal.

But you are in for something that looks like a car crash in slow motion, with you at the wheel. After your second chemo session, it will be almost routine. By the fourth session (if you have that many) you will be reassuring the frightened rabbits that have turned up for their first poisoning.

Cancer, including Hodgkins, is no respecter of age, creed, beauty, wisdom or whatever. One of the GPs at my doctors' surgery got Hodgkins last year - he is now recovered and back at work. I was 45 when I got it, so if I was old enough, I suppose you are too. There is some increase of likelihood to have HL with age, but it is a matter for the statisticians, with no clear answer. A compromised immune system or, as I had, a history of immunosuppresant drugs may be a risk factor, but the numbers involved are too low to give a strong answer. Or so I have read - I'm a former patient, not a medical professional. Having told you that I was 45 when I was first taken ill, it may comfort you to know that I will be 60 on Thursday, and still act more like my shoe size than my age.

As to wine, I had more than one glass today, as my family surprised me with lunch at a country pub. I picked grapes in France in the 1970s, more than once. Savage work, but I realised that I liked wine, and took every opportunity to indulge my taste for a while at least. I can drink in two quantities - nothing at all, or too much. I do the former mainly, but I would not begrudge you a glass or two. May I recommend a Chilean Merlot, or a decent Rioja, or one of your excellent Californian wines, or something from Bordeaux or Visan, where I worked, or even one of our excellent British wines? Stay sober during the chemo, though. It isn't that the alcohol negates the effect, more that it will upset you already upset stomach, and other organs if you overdo it.

I've had a great weekend, staying in our cottage in the countryside with my wife (she's the one on the left) and our son. I was surprised at lunch to find my two daughters and their husbands, along with my 4 grandchildren plus step-grandson, with a superb lunch as a bonus. This followed the Easter service in the village church which rekindled my faith. I shall not go into details - I think it wrong to discuss or press my faith in a forum for sufferers of serious illnesses. I shall do so privately if you want.

Before long, this whole nightmare will seem as a fleeting daydream, rather than the omnipresent nightmare it is now. Pick a dream - any dream - and reserve it. I have no idea what Sat Nam Fest is, although I may have ordered it in a Thai restaurant, but that may be a start. You may have wanted to visit a place, meet a person, do a thing, whatever it is, then make your note now, and tell someone you want to do it when you get better. They will encourage your whim whilst you are ill, but will stand back in amazement when you get better and do it.

Stay in touch!

Tony (we can drop the "K" now - too formal)

If you do a little research, even online, you will realize that they have no correlation for cause of HL with ANYTHING, even genetics. BUT, thankfully, although they don't have any idea how or why, the treatments are HIGHLY successful! I have heard this comment, more times than I can count, now: "If you had to get a cancer, this is the one to get." Btw, I go to a support center for those with Cancer, and my Group Therapy has people with all different Cancer diagnoses, and most of them are healthy eaters who lead really active lives (running, aerobics, etc.) prior to obtaining diagnosis. SO, I don't think how "healthy" we are is a factor in getting Cancer, of any kind. One thing, though, if you are otherwise healthy, than you should make it through treatment fairly well and come out of it in even better health, once the Cancer is treated and "sent packing"!
I am 43, and turning 44 in one month, and although I can't claim to be in as good health as you, I was in good enough health, that I did notice my lack of energy, and knew it was related to the enlarged lymph node in my neck. I, too, was not prepared for the HL/Cancer diagnosis, and it was shocking to hear, but overall, I was very thankful that it was something that is treatable, and I am looking forward to being even healthier than I was, and to be able to get back to my workout routine, and even be able to do more, since I now won't be so easily exhausted, due to the HL.

1 Heart

@CCaldwell Hi Chris, Thanks for the note. It makes good sense. Today I have abandoned the " save paula’s hair project " after learning that the percentage rate for ice cap therapy was 50% to 60% able to save the hair, for people taking ABVD. My friend Jackie got in my face and said " you have bigger fish to fry than your hair " Not sure why my vanity seemed to become so damn important. I guess just another life lesson about one’s priorities and my attachment to outside things. The ego can attach itself to the silliest of things and realizing this today has helped me to release attachment and " let go " The vulnerability that comes with this disease is very awakening! You start to also really see who are the true troopers and strong friends versus the ones who just can’t seem to handle these things. In any case the day is moving along and what a pretty day it is. I am taking an office day and gearing up for more tests tomorrow. I am so glad that you are better and getting your life back! Yay!

Very well said, CCaldwell! Tired is good, so long as there's a good reason for being tired.

Hey... Graviola is a huge anti-cancer herb. Just start taking it. Read up on it, it's amazing stuff. If you have any questions then please feel free to ask.

another herb of significance is Anamu.

@Sanguine108 Maybe a hundred pounds of organic carrots will help. If you haven’t had Hodgkins Lymphoma, haven’t had a peer-reviewed paper published by a real medical journal, and aren’t a doctor, then please don’t post crap like this, where vulnerable people may believe it.

A lot of anti-cancer drugs are derived from herbs, plants, micro-organisms in soil. I do not dismiss these out of hand, but sod off.

@paulap293 - It is all about the "big picture". I am glad you are shifting your focus, and finding the strong friendships that you can rely on. Those are the things that will give you the strength and determination. I recommend to find a nice short hairstyle that works for you, until you need to either find cool ways to cover your head or not. I just wonder how long it will take to grow back, where I can style it the way that I want, again. I told my husband that I may not be psychologically ready for longer hair for some time, because every time my hair touches my face or is brushing on my shoulders, over this last few months, it is because it was falling out, and I don't want to re-experience that PTSD after my hair has grown back and I am healthy.

Hi Chris, Yes, I will most likely shave my head when it starts to fall out. The way Samantha did in Sex and the City. Not sure if you watched that season? It was very dark the way they portrayed what she was going through and probably very real in terms of what women go through. The good news is the because I practice kundalini yoga, the yogini's tend to wear white head wraps. Golden Bridge is a famous kundalini yoga studio in your neck of the woods ( on Broadway ) right by the crystal shop and the santa monica homeopathic pharmacy.
I am going to order some today and probably go shopping for a nice wig when my mother arrives next week. I get a good discount at Naimies in the valley for wigs. I think you would look really good in a bob or a pixie? Just a thought. Maybe bangs? My forehead is too long for bangs but I am sure I will figure something out.. The head wrap thing is most likely going to be my " look " plus it is said to help protect your crown chakra. Not sure if you are into metaphysics so I will keep my " hippie " ideas to a min.. any way, I hope you are having a good day!!

@Paulap293 - The little area you generally get for your chemo infusions can accommodate one chair other than your "lounge" chair, so I would suggest that you limit to one person to stay there with you. Others can stop by and check on you, but keep in mind you are likely going to be in a big room with a bunch of other people receiving chemo, and there is a lot of mobility needed in that space, to attend to everyone, and they don't need a bunch of visitors in the way. It is nice that your mother will be there for you, since your boyfriend is unable to be. After a few treatments, when I was familiar with the process, I realized that I really didn't require anyone to be there with me, as long as I got a ride home.
Regarding a PICC or a PORT: You can maintain your "active" abilities with a PORT, but not a PICC. A PORT is under your skin (requires a small surgical insertion and is generally up above your collar bone), and allows you to swim and bathe as normal, whereas a PICC is an external thing in your upper arm (sometimes near the collar bone), and you become limited to activity (can't lift more than 10 lbs with that arm, and you must keep it dry, so no sweating or baths/showers without plastic covering). Keep those things in mind in your decision. The PICC worked for me, because I wasn't that active or planning on being and since my treatment period was going to be 3 months or less (since I got it one month into my treatments), I went for the PICC. I am so eager to get it removed, though! It will finally be gone after April 4th (same day as your journey begins).

1 Heart

Hi Chris, thank you for the note and info. I'm at Kaiser Permenente as we speak getting ready for my respitory exam. I wish I would have researched insurance plans more before selecting Kaiser P. I just never ever imagined I would actually need this type of care? Hind sight is 20 20.. Can't look back just need to move forward and make the best of this. I'm not going to lie the port thing scares me but I'm sure I will get over it as I have with all of the other scary things involving our cancer treatment. I did not know that we would be in a room with other people. That doesn't bother me but it does sound strange. Did you make any friends there? How are you feeling today? You must be so happy and excited that it's over? How did you discover you had HL? How long g do you think you had it? I'm looking back over the last eight months or so and realizing I was tired. I also had a weird itch in my nether region ( probably TMI )

Paula, there are partitions, so you don't totally see the other people in the infusion room. I talked to one person, once, the day of my last treatment. He was a guy in his young 30s who probably also had HL, but I didn't ask. He was asking his Dr. about losing weight, because he needed to manage his weight for an upcoming bout (he was some sort of kick-boxer or something), and he wasn't letting cancer stop him from doing anything. Didn't even get his name, so it wasn't like we became buddies. I never completely noticed any of the same people, on the different times I had infusions.

I discovered my swollen lymph node in my neck, about 1 year ago, and I dismissed it for about 6 months because I knew I was likely going to be told, by the Dr., to give it time and it would likely go away, because sometimes those, in that area become enlarged when you get certain viruses. When it didn't go away after 6 months, I finally went to my Dr. and did blood work, but that came back all normal. He then ordered a Fine Needle Biopsy of the enlarged lymph node. The needle biopsy came back with a some "reactive lymphocytes". Those could have been from an auto-immune disease, a couple of viral sources or from HL. So, in order to determine which one, I had a surgical biopsy of the lymph node, by a Neck Surgeon, on Nov. 13th, 2015, and he called me on Nov. 19th with the diagnosis. I really was certain that it wasn't cancer, until that moment, when he told me that it was positive for Hodgkin's Lymphoma. What was strange is, for me, I only had one other symptom and that was the fatigue. I guess that I had the fatigue for a few months before the lymph node became noticeably enlarged, so by the time I was diagnosed I had likely had HL for close to a year. Itchiness is another symptom, as well as sustained fever and night sweats, but I had none of those.
I have started some normal routines, like taking my son to his Spring Break Camp this week, and that has been nice. I also found myself doing more errands after dropping him at camp, which I just hadn't had the energy to do, even before being diagnosed. I used to have a friend who worked in Oncology for Kaiser in L.A. area and she didn't like it, so she relocated to Virginia. I reached out to her when I was diagnosed and she let me know what medical steps I could expect. You are able to go to different oncologists within Kaiser, if you are not comfortable with the one you have. Make sure you speak up, or else you won't get what you need, whether it is someone you can understand or just someone who takes time to explain things to you. Thankfully, you are here, though, and I, as well as others, are good resources. Please feel free to send me a private message, with any questions, nothing is TMI. I would like to know where you live, for reference, so that I can point you to any good resources in your area.