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I'll second that Peter, stay strong believe in your team
Together we are stronger
Time for treatment,
Thanks guys, I did get the results back from my CT scan and my oncologist said he'd recommend starting treatment: six once a month treatments of Bendamustine and Rituximab. I'm 95% on board with the decision. The CT scan found a significant enlargement of a lymph node in my abdomen (9 cm by 4 cm). Considering for the last 5 years we have been looking at lymph nodes that are just a couple cm this is huge for me, so I was very agreeable. And my oncologist who seems like a gentle soul didn't seem to be suggesting treatment as much as saying "it's time." Oddly enough, and this is the majority of my 5% hesitancy, is in the world of waxing and waning lymph node sizes with indolent follicular lymphoma, things are actually shrinking right now. Up to this point, I had been really worried about two lymph nodes in my neck that had gone from 1 cm to 3 cm. The day my oncologist told me about the 9 cm lymph node in my abdomen, I said, "I think the nodes in my neck are shrinking." I wasn't certain, but I thought. Last night I was checking my neck and one of the two is probably half the size, so I feel a bit hesitant about starting treatment when my lymph nodes are shrinking naturally as part of waxing and waning. Another hesitancy is just how I feel. I feel great. I never have had a clinical symptom. I know, I know, you don't always have to wait until you feel terrible, but that is 1% of my hesitancy. Nonetheless, I went into this thinking to myself I was going to trust the wisdom of my doctors, and I do trust my team, so full steam ahead.
I'm started on rituximab and bendamustine myself and I feel fine. I've another session next week. I was prepared for side effects, but I haven't had any at all apart from an allergic reaction to the Rituximab, quickly fixed. I've enough energy to get through housework and gardening and a busy social life. If it continues like this, I shall be delighted. I spend more time outdoors when I know my immunity is low, in order to avoid infection in crowded places.
The waxing and waning of lymph nodes is a familiar history. Mine disappeared altogether months ago and haven't reappeared, although a scan shows some slight swelling, I can't feel anything. It's quite invisible too, because all the disease seems to be concentrated in my hip bone. That is uncomfortable, but otherwise I'd never know there was anything the matter with me at all. I probably had lymphoma for more than 5 years and didn't know anything about it. It's sneaky!
It's such a vague disease, but I realise that I need to have whatever treatment it needs. It won't go away by itself, so I want to get it into remission and get on with normal life.
I hope you fined yourself comfortable with your treatment and able to get through it with great success!
I can't tell you how much a comfort it is to see you write that you haven't had any side effects other than the allergic reaction to Rituximab (recognizing that everyone has a slightly different experience of course, but it gives me hope!). Yes, a vague disease. I like your line, and I'll try reminding myself of it, "I need to have whatever treatment it needs." Just because I'm feeling fine doesn't mean there isn't a need for treatment. That is such a hard thing for me to get into my head!
Thanks for the words of encouragement!
You're most welcome, Wayne! I've had a lot of wisdom and encouragement here myself. There's a lot of people with much more experience than me.
It is true about individual responses. I just speak as I find. I'm still pretty new to this business too, but they seem to measure our progress in scans (I get one after 12 weeks) and blood tests rather than our lumps.
My allergic reaction was a sudden snotstorm hay fever attack on the first dose. So they gave me a good dollop of intravenous Piriton and some hydrocortisone and it just stopped. Whole thing lasted less than 10 minutes from first sneeze. Then I fell asleep in the reclining armchair and missed my tea. They tell me they'll be ready for me next week, so I guess that's more Piriton and another drowsy evening. So glad I don't have to drive myself in or do the hour long bus journey in and out! But that's just the antihistamine response, not the rituximab.
The bendamustine seems much less dramatic and a lot quicker. I was only there for about 90 minutes for that and nothing interesting happened.
The Haematology outpatients share space with oncology and renal dialysis patients in my local hospital. Some of them look very poorly and I feel a bit of a non-event in comparison. I feel very safe there though. The nurses watch and check on you all the time.
Personally I'd agree with your oncologist, regardless of the fact your neck ones are getting smaller you have nodes in the upper part of your body and lower, ie either side of your diaphragm, which is the same as me, mine were armpit and groin, so unless they vanish completely, (which I doubt thy will) I'd take the course.
Good luck and if you can enjoy the attention you will receive, doctors and nurses will make you feel good.
In the end, it's not the years in your life that count. It's the life in your years. Abraham Lincoln
Thanks Peter and Cecren,
Cecren, I'm in the same boat. I live an hour away from the city where I'll get my treatment, but luckily my wife is coming with me, and I suspect will drive me home whether I say I'm sleepy or not. I'm typically the chauffeur, but she's promised to nurse me through this if I need that, and in that way I'm luckier than some.
Thanks Peter, I think I needed to hear that I'm going down the right road despite being asymptomatic. I'll lap up the attention
Well, I've started. Five days ago I started my first round of bendamustine and rituximab. I've had a few side effects but it has been quite livable. Getting the IV went a bit smoother than expected. In initial plan was to have one short day (8:15 to 1:00) of the bendamustine, and then two longer days (8:15 to 4:30) where they added the rituximab. Day three was just rituximab. I didn't have an allergic reaction to rituximab so I was done every day by 1:30. On the rituximab days they gave me an iv antihistamine benadryl I believe, but rather than making me sleeping it made me agitated. The nurse said some time you get gittery legs but i was dancing all over so the second day they gave me 1mg of ativan to stop my dancing LOL. The only other side effect was for the first few four days I'm on dexamethasone to reduce nausea and it is arousing too. I have a bit of insomnia but feel great during the day. Today will be my first day without it, and the nurse said for those who are energized when taking dexamethasone you may feel a bit like superman on it but day five will be your kryptonite! We'll see, it is still very early (7:19 in the morning but so far I feel fine). Who knows what the weeks ahead will be like, but so far so good!
Ok, kyrptonite day sucked! The dexamethasone wore off and then a wonderful day of exhaustion, headaches, well just achy in general. I spent the day on the couch. Is that payback for starting off pretty easy? LOL. I'm hoping that tomorrow will be a whole lot better. Wayne
Definitely Kryptonite! Time to pop your tights in the wash and slob out, maybe? I guess it's all part of the rich diverse experiences chemotherapy brings us. It's so unpredictable - makes it hard to plan.
I had a completely slobby day on Sunday. Found that getting breakfast had completely used up all my physical energy and mental initiative. So it was time for the sofa and a Victorian novel. The batteries recharged, I spent all day Monday weeding and planting and watering, then washed everything in the laundry basket. No two days alike!
Today my only possible side effect is a red blotchy rash all aross my face. I was going to go to the Old Crocks exercise class, but I think my face looks so diseased, folk'll think it's catching. It'll be better to hang out with my lettuces and strawberry plants instead. Green therapy rather than green Kryptonite...
Hi Cecren! Wow you really don't have two days that are alike! That is going to make things a bit hard to plan. I guess we have a practice of acceptance coming up. I'm envious that you have lettuces and strawberry plants. The snow is barely off the ground on the Canadian prairies. I get the sense that gardening is good therapy for you.
Of all the crazy things, I think a lot of my headache was dental. While I wait for a root canal (that it looks like they will go ahead with despite the chemo) I have a huge food trap by a tooth. With the steroid I didn't feel pain that told me that I was damaging the gum while I tried to clean it out with some floss, maybe irritated a nerve or something. I'm off to the dentist today. I was complaining to my wife that the days before I was being careful to not go too crazy exercising or doing chores, but really I was doing fine. Went for a long jog, helped my daughter study. I was fine, and then I injure myself with a little piece of dental floss! How crazy. But if I can't feel pain, I can't tell when I'm doing damage. I will try to remember that lesson in a month's time when I will probably have another four days of steroids.
You are into Victorian literature! I'm married to an English major, and she suggested we read some things together now that I'm going to be underfoot for the next few months.
Ouch! Dental complications are unwelcome anytime, but especially now. Do they still give you antibiotic cover for that sort of work while you're on the chemo cocktails, or am I out of date on that?
You have my sympathy for that. I hope it goes smoothly and comfortably. My one and only lymphoma lump popped up under my jawbone and was initially thought to be a dental problem. I got referred to the city dental hospital and had untrasound scan and a wonderfully awkward circumferential x ray of my jaws. Means I know I didn't start with anything going on, but our infection resistance does make life slightly more risky for such problems. And dexamethasone sounds astonishing stuff! I've seen it used for pain management for people who've had cranial surgery. Stops your brain swelling after surgery and eases the skull pressures, apparently. I'm not on any steroids that I know about, apart from the single dose of hydrocortisone with the rituximab, for the allergy.
Gosh. Canadian prairies! No wonder you're at a distance from your treatment centre, or that it's so cold still. We haven't had snow for weeks, though it's still frosty at night. I'm in north east Scotland, so although the climate ought to be similar, it's more maritime here and there's Gulf Stream influences. This little valley has a microclimate which makes it drier than surrounding areas and protects us from the northern and westerly winds. I have a small home made polytunnel, not heated, but a good shelter, so my early strawberries are in bud already. I can grow salad stuff all winter - chard, purslane & Japanese greens. Fresher than the sad little baggies of composting greens they sell at the local supermarket anyway!
I haven't cancelled any commitments myself. I know I can manage if I don't try and do everything at the last minute. And Nicky has been coping with classes of 5-6 year olds all though her treatment! This Sunday was my first day when I didn't have any set schedule, so I think my body decided to do some downtime. Today is back to the busy stuff, with a big batch of baking and more housework. Superpowers would be really handy sometimes!
PS It's Bleak House this month. Dickens isn't a favourite, but so far, so good. Did a degree in Eng Lit and history yonks ago.
North east Scotland! I know so little about northern Scotland other than Aberdeen is up in that area , and a sort of alternative pop musician in Canada, Loreena McKinnitt, wrote a song about the Orkney Islands called Standing Stones. Ya, that pretty much covers my entire knowledge of your area. I'm so sorry. We had hoped to get over the pond for the first time this August (to go to Ireland ) but that has been put on hold at least until I know how this works out.
I love the idea of growing vegetables instead of buying. I love your language "sad little baggies of composting greens." I have been lucky enough to be part of a community shared garden (a farm actually) that provides us with fresh and organic veggies. The shared part is mostly that we buy a share (usually 1/12 of the garden), the customers actually don't do much gardening. Maybe twice a year we go out and actually pick vegetables, but we enjoy that time. We have a little house in a town of about 18,000 here which includes a back yard where we could do some of our gardening, but it has never been part of my life.
I'm suspect they will put me on antibiotics when I get the root canal, but I'm guessing. Hold It! Nicky has been teaching throughout her treatment. Now that is something to shoot for! I love it.
You are reading Bleak House. I will have to tell my wife, Laurie! My background was psychology so a bit of a Philistine when it comes to literature! I will have to change that.
So sad you had a bad Sunday Wayne, but it can be because you feel like getting on with things and the next day your body squeals at you lol.
Is your back yard all grass and stuff, my aunt who lived in Nova Scotia yard was like that until I went 40 odd years ago, and started digging it up. Her daughter who has the house now also keeps it going with fruit and veg. But last winter they lost a plum tree I planted all those years ago, so will have to get another.
So now, of course, I have to ask where you live. I seem to have joined the UK group, which is pretty cool.
Yes, my back yard, until we planted some raspberry and two apple trees was entirely ornamental: not an edible thing to be seen. That strikes me as kind of absurd now. We have so much land, why don't me make use of all of it?
How is your treatment going?
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