Recovering after treatment

sduch1

Hi--I was diagnosed last February. I am 35 and have a 1 1/2 year old daughter and a 4 year old son. I finished chemo on Sep 7 (I had neo-adj chemo and adj chemo) and radiation the week after Thanksgiving. I am still going in every 3 weeks to get Herceptin. I was excited to finish chemo (ugh, what a brain fog), get my appetite back, start exercising, etc. I felt pretty good during radiation and actually kept a pretty normal schedule, spent a lot of time with my kids, wasn't working, only got tired and had really irritated skin right at the end. Since radiation, I have had laryngitis, strep throat, and the flu. And, I seem to have a constant cough and get really run down if I try to do too much. I know I have small children, and everything I have had, they have also had (including my husband) so I know it's not just me but I'm starting to wonder when I will start to feel better, get my energy back, feel consistently "good" again. When I'm feeling good (rare stretches of time this past year) I find it easier to keep the fear of everything that's happened at bay but when I feel the way I do this winter, I feel like I'm never going to feel better.

I'm just wondering, how long did it take you to start to feel better and like you had recovered from your treatment?

SeattleMama

Hi sduch

I'm close to your protocol (neo adj, surgery, new chemo coming up). Didn't you have time off from chemo for the surgeries?  Did you feel good then?

I have been off chemo for 6 weeks now, and I felt great going into surgery and even better (with the cancer OUT) after surgery. 

Onc has to come up with a new recipe. At first, neoadj chemo worked on my initial tumor and nodes, but failed on a new mass that I got while getting chemo.

{{HUGGS to you and your little ones}}

septembersong

Hi sduch1, 

In the past 10 months you've had major surgery, two courses of chemo, and radiation. You have two young children and a husband. Plus the anxiety of dealing with an unexpected serious illness and the general disruption that comes with treatment and recovery. I think you're doing very well to be focusing on regaining your normal routine and restarting your exercise schedule.

Everyone's different, of course, but one rule of thumb I've seen is that it can take about a year to regain your strength after treatment. Someone once compared the effects of chemo (only one part of your treatment) to those of a forest fire--even after it's out, it takes time for the forest to grow back. I think the same is true for regaining your strength and stamina after treatment. 

My experience isn't typical--I had issues with peripheral neuropathy and arthritis after treatment that kept me from feeling as good as I'd have liked. I was older at diagnosis, which may be a factor. BUT I can tell you that the anxiety simply fades with time. It comes back with every mammogram, but those haunting thoughts are a thing of the past. 

Congratulations on finishing treatment, and best wishes to you and your family for good health and happiness in the new year. Hope it's full of laughter and light. 

--Ann

Alicethecat

Hello Sduch1

Firstly, sorry to hear you're having up and down days with your recovery. Strep throat and winter can't be helping and it sounds like you have a busy time with your young family!

My stats are similar to yours. Like you I have that rare combination of ER-/PR+ HER2+ and was lucky to have no lymph node or vascular invasion despite having a 3.4cm tumour.

I'm now bursting with health and feel really well most days but it came on suddenly.

After rads in October/Nov 2012, I was well but had fatigue most days in December. The fatigue was between 2-4pm and then started at 3pm then 4pm then 5pm and then suddenly in January 2013...boom....no more fatigue.

Perhaps this is how it will be for you!

Whether the lack of fatigue now is because I made a special effort to eat organic food where possible and cut out parabens I don't know. But being gluten-free also seems to be helping as well. Could just be luck, however!

Hope you start to feel more like your healthy self soon!

Alice

maryannecb

Talk to your team about the constant cough. Sometimes radiation damages the lung. It's called radiation pneumonitis. and happens a few months after rads finish.

I took me a good year to feel more normal. Sounds like you are on the road, keep active and try to do all the normal things of life.

sduch1

Thank you so much for your responses! I did have time off after my Taxol and Herceptin, before surgery and I felt really good. If only the only chemo I needed was TH. I feel like that was tolerable and it was the AC, after surgery, that really did me in. That is a good analogy about the forest fires. I keep expecting to feel better but have yet to experience it. Hoping I will get that burst of health soon. I don't think it has helped that I seem to be getting every bug traveling around our area/preschool. I will ask my RO about the cough. I am due for follow ups with pretty much every one of my drs! I'm thankful for such a great team but I'm also sick of drs appointments! I am also wondering if its a cough related to Herceptin. Going in for Herceptin tomorrow! A year sounds about right at this point. Every time I try to do too much I end up run down again so I am learning to take it easy and get the rest that I need.

Hugs and prayers to all of you.

Sarah

sduch1

Alicethecat---it sounds like we are on a similar schedule except you had surgery first. Are you still getting Herceptin?

SeattleMama---good luck with your 2nd round of chemo!

sduch1

And, I just want to say how grateful I am to the women who've been down this road already and make it a point to check back in with those of us still in active treatment. It is your encouragement that keeps me going.

Alicethecat

Hi Sarah

I'm still getting Herceptin every three weeks. Will go on until July 2013.

Providing I have an antihistamine, Piriton, in the drip beforehand, there are no problems with it at all. Hope it is the same for you!

When I didn't have an antihistamine in the drip beforehand, I got pains down my right arm, left shoulderblade and left arm and went to A&E as I was so scared. They couldn't find anything wrong but thought it might be a late reaction to the Herceptin.

Now I get the antihistamine first, I have no problems whatsoever.

I mention all this in case it helps you - but hopefully you won't have any problems with it either!

Ladies who were in front of me in treatment kept me going too - and they still do - so thank you everyone.

Best wishes

Alice