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Lymph nodes getting smaller

Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

When I was diagnosed with Hodgkin's lymphoma it was because I had swollen lymph nodes on my clavicle bone. They found about 8 of them 2 to 3 cm in diameter and I had a big bump that you could see without looking too hard. It got bigger at some point during pregnancy and then something weird happened! After I gave birth the bump and the lymph nodes got smaller and softer. My doctor said pregnancy can do weird things but he still didn't have an explanation to why?  For that reason I was kind of hoping that maybe it will just go away but after the PET scan, the nodes were still cancerous, just smaller. They found a few small ones in the chest area but those I cannot see.  Now it's almost time for my 3d chemo treatment (this coming Tuesday) and I can see a huge difference already. I can barely see the bump and when I touch the lymph nodes, they seem so small, just like little pearls and not kidney beans like before. Is it safe to say I'm responding well to the treatment? I'm seeing my doctor this coming Monday and I'm sure he will have an answer but I would like to know if anyone else has experienced something like this?

After the first chemo I didn't feel well for about 4 to 5 days and then felt almost 100% after. Second chemo was a little more difficult. Even today (day 11) I woke up feeling tired and my hands are shaking. Third one coming soon, so I wonder if it 's going to be even worse than the second one?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3522
Joined: May 2012

Life is Beautiful,

Without recalling the particulars of your case, it sounds like your treatment is going perfectly. 

The standard sequence of events in treating lymphoma (at least late-stage disease; I am not really that familiar with the protocols for Stage 1 or early Stage 2) is: (1) start chemo, and give at east two, but usually three, infusions; (2) give a diagnostic CT, to see how the medicine is working; and (3) finish the cycles remaining.  After all cycles are over, (4) a PET scan is run, to look for any possible, residual disease.

This is exactly the history my next-door neighbor has been going through, and he was extremely advanced Stage III (see the Thread "Odd History', which I just updated regarding him yesterday). It is also exactly the schedule of events that I was on.

I recall when I went to the oncologist after my first three infusions, to get the CT results.  He was delighted, and said that things were going superbly, with most nodes shrinking about 60%, or a little less, but all shrinking a lot.  I asked if there should be any disease at all, and he said yes, and that there was no (zero) liklihood that I would have had no disease left at that early point. 

The remaining infusions are to finish killing off the disease, and to ensure that there is no trace disease left in your system, which could relapse later.  It is very important to finish ALL cycles, since your number of treatements is based upon a lot of clinical research over decades of time. It is natural to want to be finished, but do not quit.

As I wrote before, each infusion (I did twelve, over six months) seemed worse than before, but this is not true of all people, especially folks who are only getting a few cycles total.  Rest when you need to .  Unfortunately, in America people are conditioned to feel thy have to be busy with something to be of worth.  Europe and most other nations are not like that; they believe in relaxation and attending to their spiritual, or at least emotional, well-being. 

When I was in Scotland in the Navy in the late 80s, it was a Wednesday afternoon once, and everything was closing. I asked why, and the response was , "Cause it is Wednesday." I asked why that meant closing the town, and the response was, "Cause we always have."  Sundays, also, virtually nothing opened, except a few restaurants, and the motel desks. The rural areas are still like that, but the big, metro areas have adopted the dog-eat-dog, never rest American model for commerce.

It is a better way of life, to rest and relax.   It sounds like your meds are working perfectly, and that the doctor will tell you exactly that on Monday.

max

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Lifeisbeautiful's picture
Lifeisbeautiful
Posts: 50
Joined: Jul 2014

Even before I began my chemo treatment I asked my doctor if it's necessary to do all 6 cycles if I respond well sooner and he said that he beleives it is very important to do them all to make sure you kill all cancer cells. So no matter how I feel and what else is to come, I'll continue my treatments. After my calculations I should finish right before Christmas, so I should have a "no more chemo" Christmas! :))

I did read your story and was wondering if there are other people who got worse with more chemo treatments? I know everyone responds differently but is it common or not? My biggest concern is not being able to care for my baby. I have lots of help with him but I want to be the one and unfortunatelly when I feel tired I have a hard time even holding him (he is also a big boy, at 2 months he weighs 15 pounds already!) We are also moving to a new place and I'm not able to help much with that so allot of things are happening right now besides my cancer but they keep me busy and take my mind away from my own situation. And yes, you're right about he europeans relaxing more than north americans but I think there should be a balance between work and free time. Where I come from people like to relax a little too much and here (Montreal, Canada) people tend to work too much, so neither is good. :)

I feel really tired and weak today so I'm going to taske a nap to hopefully feel better and go for a walk this evening. It's a beautiful day and summer is still here for now. ;)

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Hi Lifeisbeautiful.  It sounds like you are responding well to treatment - congratulations!  Talk to your doctor about your side effects - maybe they can help (hands shaking) .  There's a good and bad side to progressing through chemo.  The good side is you get better at dealing with it mentally.  It's less frightening and you kind of know what to expect so in that respect it's easier.  The bad is side effects tend to get worse -particularly fatigue.  This isn't true for all people and you may be one of the lucky ones there.

I was very fortunate that the side effects weren't too severe for me.  The expected happen (like hair loss, fatigue, etc.).  I learned to tweak a few things before, during and after chemo to avoid mouth sores, constipation, and the like.  For me, the fatigue did get worse.

Be good to yourself, rest as much as possible, and celebrate milestones along the way.  You're almost half way there!

Big hugs,

Jim

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

The first chemo for me was the worst. It took 9 hours and the side affects were extreme. The next 7 have been about the same unless I over did it during the three days after chemo. Then my recovery to feeling better took longer. Like I had a buddy drop in from Hawaii and I took him fishing day 2 and 3 after Chemo. I payed the price by not rocovering for a week. The chemo days for me have gotten worse in terms of just feeling gross. I tossed my cookies during chemo on #6 and 8 (yesterday). But today I'm ok and at work. Although nothing has flavor, as usual. You will get through this. If your nodes are shrinking, the chemo is working. The last three months have flown by for me as I dreaded chemo which just made those days come faster. Stay positive and try to not lay in bed too much. I found a nice shady area outside and it helped. Also exercise as long as your body allows. I ran and did pull-ups, push-ups and planks until about #4.  My body started to hurt and I have just been walking and stand up paddle boarding. Keep up the good attitude you have and it will be over quickly. 

Zappymom12's picture
Zappymom12
Posts: 8
Joined: Oct 2015

I hope someone can help.  My husband just completed 6 rounds of chemo (FCR).  The lymph nodes in his neck and groin area are still large.  We will wait a month and get more blood tests to see if there needs to be more chemo or posibly a bone marrow transplant.  He has Non-Hodgkins Lymphoma.  

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I was diagnosed with follicular non-hodgkins and did 6 rounds of R-Chop. The tumor/enlarged node that started the whole thing had shrunk but was still large. So they had me do 3 rounds of RICE and now we are planning stem cell. The actual Stem cell process was supposed have started last week using my stem cells but was postponed when an abnormality was found in the bone marrow biopsy. So now we are going to be looking for a donor. The good news is that the 3 rounds of RICE put the lymphoma in remission. The stem cell procedure is to make sure the lymphoma is gone. Between now and then I will be on Rituxan. 

 

All you can do for now is wait for the tests to find out what they recommend.

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