Well I recently found out I have Hodgkins lymphoma. I am 36 years old with a 4 almost 5 month old little girl. I should start chemo probably by the end of the month and just wondering what others have experienced. I know all are different in how we respond to the treatment...but I just want to have an idea for how I could be with my baby. I have a great support system...but you know it is my baby that I want to be apart of her life. Any advise or experiences would be great to hear!
Hi,
My husband was diagnosed back in June two days before our second son was born. He has his chemo every other Friday in the morning. Greg goes to bed after he gets home on Friday and pretty much sleeps the entire weekend. By Sunday night, he's up and helping me with both of our boys again. So, in his case, it's three full days of rest before he can really function again. After those three days, he's up running around with our two year old, changing diapers and more! Then, we do it all over again two weeks later. :/
I hope that's encouraging to you. He's doing more than I ever expected he'd able to do during this time.
Awh thank you so much for that information. It has to be so hard not being able to "always" be there...and in my case too I know I am going to be sad not always having the energy to be there for her. I do like that he feels better a few days later so that gives me a lot of hope. Thank you again!
-martha
Hi Martha,
I'm 41 and was diagnosed as stage 2A last November. I had 8 cycles of ABVD and a month of radiation. If you haven't already had a bone marrow test, you'll have to have that. Some folks have a hard time with it, but I had absolutely no pain at all, only very minor stiffness liked I had worked out a little bit too hard. Are you going to have a port put in for your chemo? It makes things a lot easier than using an IV...
With my chemo, I'd go in every other Wednesday. I didn't have any real big problems with tiredness - but after my third treatment I was sick as a dog all day Wednesday. By Thursday morning I wasn't sick anymore, just queasy and a little weak. By Friday I still wasn't feeling great, but I was pretty much back to all my normal activities (I have three kids, and I never missed any of their activities. My son was on two baseball teams and I continued to coach both teams thru out all my treatments. I never missed a single practice or game). On Friday I'd go back to the hospital for a shot of Nuelasta. Some folks complain of having a lot of pain from the shot, but I only had some minor muscle stiffness in my knees, hips, and lower back for a day or two. Again, it just felt like I had worked out a little too hard.
I ride a bus to work and with three kids bringing home germs from school every day I was initially worried about catching something. I never limited who I came in contact with or where I went, and luckily I never even came down with a single sniffle or cough. I was lucky enough to have had a flu shot before being diagnosed.
Your taste is going to change while on chemo. Things you like now may taste awful later, and things you didn't like before may taste great. For me, anything with tomato in it (soup, pasta, pizza) tasted like heaven (One of things that I had previously liked but that tasted awful during treatments was any type of diet soda). I seemed to be hyper sensitive to the chemo - I could taste it during the whole treatment. To mask the taste, I tried chewing mint gum, black licorice, and a few other things. It's been 4 months since my chemo treatments ended, and I still can't stand the smell of mint gum or licorice. If someone I'm talking to is chewing gum and I catch a wiff of it, I have to take a few steps back or my stomach starts grumbling.
Good Luck and best of health in your journey. I know it's a scary time for you and your family, but try to focus on the future and getting healthy. Things WILL get better!!
Pete
Pete,
Wow! Thank you so much for this information. This has actually helped me greatly so I really appreciate it. It is so hard to know what to expect. Yes I am going to have a port place in me-honestly I am so tired of all the IV's they have had to do thus far!
I hope you are doing well and again thank you for the information.
-martha
My 14 yr old son was diagnosed with stage 3a HL 3 weeks ago. We are still in the first course of chemo treatments. He will have 4 months of chemo w/6 weeks of radiation afterwords. He has had a LOT of issues with stomach/gas pain, acme from the steroids, and overall just down right exhausted. He gets depressed easily because he wants to be able to do more, but finds as he tries, he basically hits the floor, exhausted again. His emotional roller coaster is also very hard for him, as well as us, not knowing exactly what to say/do to help. As Mom, I should be able to 'fix' this.. but can't.
Roypamt,
I am so sorry to hear this about your son. I know if this were happening to my child I wouldn’t know how to really function. I find out my stage next week and then get the ball rolling. I hate that at his age he is having to go through such terrible things. As I am looking at what I have awaiting for me soon is that this will be apart of my life for right now and make my life uncomfortable–but in the end only good things will come out of it. What I am learning is that there are support groups all over the place and maybe there is one in your area for kids his age? I know even talking on hear and listening to people it has helped me a lot. Please keep me posted on how he is doing!
-martha
Martha,
I was diagnosed with Hodgkin's last November when my baby girl was 15 months old. Turns out I'd had Hodgkin's pretty much after giving birth to her but had shrugged off the symptoms as "post-partum" stuff. Anyway, I had 6 cycles of ABVD and no radiation (I had neck and chest tumours but they advised agains radiation due to my age, gender, and the link to breast cancer). I started treatment the week after last Christmas and finished in June. It was a long haul, but I was able to work-out at least once a week on my treatment week and usually 2-3 times on the "off-week". I learned how to manage most of my side effects and was really only what I would call incapacitated a few times. That being said, I would ensure that you have reliable help on chemo days and the couple of days after so that you can rest and hydrate. If you take the time to let your body deal with the "poison" you might feel more like doing normal things with your baby. That being said, I usually felt pretty good the day after chemo (Tuesday) but by the late afternoon on Wednesday I was hitting the skids a bit and usually felt like I had a 24 hour flu - still, it was manageable! Please feel free to contact me if you want to discuss further. I don't find a lot of women in our age group that I can talk to about this!
Klaing,
I don’t think you understand how much reading this has given me a great deal of hope. I know everyone is different but thank you for posting this. I know after I start treatment I would like to talk to you more about the things I am going through to see if it was similar to you. I know I had this probably during my pregnacy with my daughter and after I had her I was tired of course but I thought it was because of having a newborn. I just remember thinking to myself how tired I was more than usual.
If you don’t mind me asking how old are you? It is good to know that I am not alone with all of this!
-martha
I have 3 neck tumors and possibly have a form of lymphoma. I'm waiting to see a specialist that wasn't able to get me in for another month. I feel like I'm in limbo and have so many questions. If it is lymphoma will it spread during the time it takes for my consultation and biopsy? Glad to have found this website to correspond with other people who have similar health issues.
pumpkin1959,
When I had my different scans done they found 3 masses in my neck. After that point I was referred to and ENT doctor. When I went to see that doctor he originally thought it was a type of thyroid cancer but it turned out it wasn’t after all the biopsy they did. The good thing is from what I have read and heard that this type of cancer is VERY curable.
As far as it spreading I really couldn’t tell you. A friend of mine her husband was diagnosed about a month before me and he noticed a pea sized lump and the doctors wenen’t concerned about it at the time. Eight months later it became of the size of a small lemon. He is getting treated at stage 4 Hodgkins Lymphoma and the doctors are very optimistic about his recovery.
I hope you can get to your doctor soon. I know when I was getting my scans later in the week or the following week- I was calling every morning to see if there was an appointment at all avaliable on the hopes someone cancelled.
It is for sure a scary time when you learn about that you may or may not have cancer–trust me I know! Please keep me posted on what you hear and how you are doing.
-martha
Martha,
I'm 35 with an almost 4 yo little girl, and trust me I still can't believe that this happened to me! I've been in treatment since the end of June, scheduled for 12 infusions with RABVD. I'm officially mid-way through and still working full time, taking care of the house, cooking, running errands, etc. I have to admit that with every chemo it gets harder and harder but I constantly remind myself that I have to go through it and be strong because my family needs me. I'm trying to look good every day, put makeup on, dress up, sport a new do with my wig and pretend that my life hasn't changed. I'm doing it for my daughter and for my husband and for everybody else who thinks that cancer equals death. It is hard but you'll be fine; you'll survive and emerge stronger than ever! Good luck and please feel free to reach out if you have any questions.
Kama
Kama,
Yay! I am so glad you are still able to function. You know I took this year off to stay home from teaching to be with my daughter while my husband was set to deploy–and well that did change! You sound so much like me in my thinking with that I just have to go through this and my family needs me too. I actually just got my wig today and it looks better than I thought it would look.
When did you start losing your hair? Did you lose your eyebrows and eyelashes too? I am just trying preparing for it all 
Thank you so much!
-martha
Hi Martha,
I am 38 yo now, got Lymphoma when I was 36 turning 37 (diagnosed at 37). Feel free to contact me if you have any questions and I'd be willing to share my experiences. I noticed you got a wig....I never did get one and kind of embraced the bald - it ended up being fun (if you can believe that...although quite cold!). I never lost my eyebrows completely not my eyelashes and I didn't even lose all of my hair but it got severly patchy. The best was only having to shave my legs every so often! It's really hard to predict what will happen with your hair but after talking with other people going through it, the best way we've found to deal with it is to take your hair off in stages, as necessary. Good luck to you + thoughts your way!
Martha,
You mentioned that you have 3 neck masses, what is your diagnosis and how do they decide what stage of cancer it is if it's lymphoma?
Yes in my initial scan they found three masses. My largest one was about 5cm and when I had surgery to have it removed for biopsy my doctor was surprised by it. He said that it was actually long and went down deep but was able to remove it. The other two are around 3-4cm. After the two biopsy they confirmed it was Hodgkins Lymphoma and as of right now I am still waiting on what stage. Last week I had my MUGA scan, PET and CT scans and ended the week with a bone marrow biopsy. (oh what a fun week it was) I get my results on the 23rd when I go and talk with my doctor and then I will also get my schedule set up for chemo. Hope this helps you out.
-martha
Martha, I started losing hair this Monday, which was day 14 of my 1st chemo cycle. Right now I have about a half of my hair left. Everytime I touch my scalp I pull out a patch. I had long hair and decided to cut it before chemo. It was the best decision I've made because I know it would break my heart if I saw my long hair lying on the pillow every morning... Now I don't care nearly as much. I'm actually looking forward to being bald completely because now I have to wear a bandana to prevent the hair from getting all over the place. I'm one of those neat freaks who hate when there's hair lying anywhere in the house, ahh :) I'm having a wig made out of the hair I cut off, but I'm also fine with the idea of being bald. I'll probably just wear my Red Sox hat and use the wig only for special occasions :)
Martha,
I started loosing my hair exactly two weeks after my first treatment. I had long hair and I just noticed that it started to come out a little bit more. Exacttly one week after my second chemo I woke up one morning and took a shower and was unable to brush my hair through! It got so tangled up that I had to put it in a "bun" and go to work like that. Next day I had my friend cut it off and a few days later I started wearing my wig. I still do have some hair but I have to say that in the past week or so I lost even more. As I said before I still work full time so I wear my wig to work but don't bother to put it on at home or on the days when I go for my treatment. I didn't lose my eyebrows or eyelashes yet but they are definitely thining out as there is no new growth. I'm planning to shop this week for some cute hats so maybe I can just get away with a hat on the weekend (and to bed as it gets really cold at night if you're bold!). I also need to hit Sephora for some eyebrow powder to cover up the "missing" spots :)
Take care!
Kama
when i was withthis girl who has h.d. al her hair fell out but now her hair is thin and cover all her hed and grew iagain relatively quickly...sodont worry too muc it will grow again!!