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Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

It has been awhile since my last post, i went on my vacation to Oregon, and i think i wasnt truly ready for the long flight, spent most of my time there taking it easy, i was exhausted by the time i arrived, and also jet lagged, i was able to get out a bit and see how beautiful it is there, but had to limit myself which really made me mad and frustrated, any other time i would have been at the river and walking thru the trails etc and fishing. I really thought i was ready for this trip, being done with chemo as of last july 30th, i thought enough time had passed but i guess it wasnt. I go see the Onc this thursday, and i am prayig i can get the PET scan i been waiting for, i need to know and get the anxious feeling stopped, i hate what i call scanxiety, but it is what it is, will post more when i learn more.

GSP2's picture
GSP2
Posts: 103
Joined: Feb 2015

hope your visit with the oncologist goes well and the PET gives you the reassurance you need.

mention your symptoms, see if they are all readily explainable or if you/your doc needs to think

outside the box and consider other possibilities for your fatigue.

Best of luck,

Steve.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I get where your coming from.  First let me start by saying I finished my treatment in December of 2014, by Easter of 2015 I went to Arizona.  I could barley walk to the pool from the casita.  There were no hikes for me and I was exhausted looking at the pool.  I recall saying good by to my family one morning because my husband and I both knew I couldn't hike the mountain.  I cried and was pissing mad, no one told me about this?  I thought Rituxan was easy.....????  Perhaps it's the healing that was hard for me.  I have always been active, fit and would rather drink bleach than take a nap.

It's been a year since then and I still struggle from fatigue.  Today for some odd reason it's really bad but overall I'm so much better than I was a year ago.  I just had a bunch of tests and the MRI showed no growth in size of the lymph nodes.  My blood is a little twisted but I have lymphoma so I guess that's my new norm.  My onc and I are puzzeled by my counts and fatigue, there are so many darn possibilities and I wonder if I will ever know.

I hope and pray you're healing and you seek the answers swiftly and all is well.

All my best.

 

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

Ok I am being cynical.  It has been a little over 7 months since my last chemo. No matter how many hours of sleep I get at night I start to crash by the afternoon. I expect it to some extent when I am moving around a lot but when I end of sitting most of the day?  Reading the above I have to accept that this is how it is going to be for maybe a few years or longer. I do know I need to keep working on eating a healthy diet and exercise (even if it is just walking) more than I used to. hopefully there will be a day when we say "remember when we were saying how fatigued we always were?".

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

When we're tired, relax.  Like I have posted before "be good to ourselves".  Take a break any away we can, even if it's just a mental pass.  Ok, I admit.....  I am the worst at this but I'm a work in progress and there is always today.  

Linda, I love the last line you wrote!  Amen!!!

We will be saying that, indeed.

Chris17's picture
Chris17
Posts: 175
Joined: Oct 2010

Saw the Onc, counts are still low, she ordered the PET scan so they will call to make an appt, im on pain patches now, for lower back pain, that just seems to never go away, but instead gets worse, some days its hard to walk, but i push thru it,cancer will never define us,i have cancer, cancer doesnt nor will it ever have me. Always be good to yourselves, and if we get tired we rest and move on to another day/adventure, and always keep a sense of humor thru all this, it is the one thing that has kept me sane. Will post when i get the scan results.

Francyn's picture
Francyn
Posts: 10
Joined: May 2016

Wishing the best for you and following your journey. I'm glad you made the trip even if it took alot out of you. We must continue planning and moving forward. Never been to Oregon but it's on my bucket list.

illead's picture
illead
Posts: 863
Joined: Aug 2012

Your words and attitude are comforting, you are a true fighter who has been through far too many battles.  I know you will continue the fight.

Becky

tiverton127
Posts: 4
Joined: Jun 2016

My 44 year old daughter was diagnosed on May 25, 2016.  She first became ill in December and by the beginning of January she had to go on medical leave from work.  It took almost 6 months to get the diagnose.  She saw numerous doctors and had many tests and finally when she was referred to a hematologist and a chest x-ray was ordered she was diagnosed.  She started chemo this past Wednesday and will have chemo every 2 weeks for 6 months.  The first couple of days she was feeling good but now she is having dry heaves.  What worries me is that she is in stage 4, which from I have read is the last stage.  Anyone out there at stage 4 that could give me some insight would be greatly appreciated.  Thanks to all of you

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

I was diagnosed at 64 with follicular non-Hodgkins Lyphoma. Becuase there was evidence of it in the abdomen (enlarged node) and by my right lung (pluerisy) I was told it was Stage 4. As already stated, stage 4 for the blood cancers isn't quite the same as for an organ cancer. I am in remission after 6 cycles of R-Chop and 3 cycles of RICE.  If your dtr is having dry heaves talk to her oncologist about getting some anti-nausea meds. 

Some tips, start taking the stool softners the night before chemo starts and continue taking them for at least a couple of days after chemo. Also drink lots of water. She will want to flush the excess drugs out of the systems as quickly as possible.  Good Luck!!!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3546
Joined: May 2012

tiverton,

 

I am sorry about your daughter's diagnosis. Her case history sounds very much like my own, and many others here. Diagnosis for lymphoma is often a slow process, after doctors work on what they assume are other problems.

I too had Hodgkin's Lymphoma (HL), which is less common than Non-Hodgkin's (NHL). The difference is the types of cancerous cells involved, but the dseases are more alike than different. I was 53 at diagnosis.  There are five common strains of Hodgkin's, and 40 or so differening strains of NHL.  It would be helpful if you state what strain of HL she has.

It sounds almost certain that the drugs she is receiving are what are called "ABVD," the most common HL treatment. It is administered all at once, once every 14 days.  I too did ABVD for six months.  It can be HARSH and the effects are CUMULATIVE. What begins as a semmingly "easy ride" the first month or two can get much worse later on. This is not universal, but common, probably the norm.

Even six years ago, ABVD could be given with NO NAUSEA.   Although I had a lot of serious side-effects, I NEVER HAD NAUSEA IN SIX MONTHS ON ABVD. Chemo drugs kill fast-growing cells, and the stomach lining grows fast, which is why it damages the lining, and causes the nausea. This is why it can sometimes also cause mouth sores, and why the hair falls out.  All of these are temporary, and virtually always return to normal within a month or so after infusions end.

As others have written, severe nausea on chemo is mostly a thing of the past, when the proper anti-nausea meds are given. I receved what is known as EMEND.  Have her ask her doctor about EMEND; it worked splendidly for me, but there are other anti-nausea meds that are also effective.

As the others also noted, Stage 4 lymphoma is seldom a death sentence, or even life-threatening.  Most strains can be put in complete remission (CR), either permanently, or for many, many years.  Yes, patients die from lymphoma, but it is usually from more aggressive strains, and after fighting for years or even decades.   Her age is a plus: My oncologist told me that the age 50 is a "great divide" in lymphoma treatment, with patents younger doing better. But even people in their late 70s are often treated successfully.  I have been lymphoma-free around six years now, and I was a very advanced Stage III when I began, and 53 years old, as stated.

Since she has HL, I am interested if you wish to share what STRAIN, and if in fact ABVD is her drug.   ABVD does not contain any steroids, and I never had an episode of constipation, but perhaps it happens.  Extreme weakness is the most immediate and common effect, again, because ABVD has not steroids to give an energy boost.  I slept 15 to 17 hours a day throughout the later months of my therapy.  After three or so treatments many ABVD patients get numb hands and/or feet, a condition known as Neuropathy.  Not every abvd patient gets neuropathy, and neuropathy usually clears within a few months following treatment, but it is common enough that I thought I would mention it.

You may want to start a new "thread," just for her issues.  A lot of people here have had whatever your daughter has, and have had the same treatments.  Most move on to full recovery, even from Stage IV.  I am glad you have joined us, and hope it will be helpful to you and her both.

max

This link discusses nausea, and lists the most common chemo-induced nausea drugs :

http://chemocare.com/chemotherapy/side-effects/nausea-vomiting-chemotherapy.aspx

 

.

 

tiverton127
Posts: 4
Joined: Jun 2016

Thank so much for responding to my post.  I don't which strain of HL my daughter has and I am not positive about ABVD treatment.  As far as I know her doctor prescribed steroids and also nausea medications but I will have to find out the names.  I will post again tomorrow once I have the correct information.  It is good to have support.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3546
Joined: May 2012

Any progress on the drugs or strain ID ?

tiverton127
Posts: 4
Joined: Jun 2016

My daughter is having ABVD for chemo treatment.  I don't know the strain yet but she is going for her second treatment Thursday and she will see her doctor then and I will be with her and I am going to ask about subtypes of HL.  In researching on the internet I found there are 4 subtypes and once I know for sure I will post again.  She has been having good days and bad.  Yesterday was really bad.  She was so depressed because she said she is sick of looking at all the orange pill bottles.  She didn't want to take them any more but I went to see her and calmed her down and convinced her to take them while I was there.  She is so confused about what pill does what and when to take them.  I came home and typed up a list of all her meds with the dosage and what they are four.  Some are only as necessary but I can see why she is so overwhelmed.  She isn't eating much because she things she wants something in particular to eat and then when she starts eating she doesn't have any taste and so doesn't enjoy it.  The second night after her treatment she was up all night with dry heaves and she doesn't get much sleep.  From what I've read it will get worse before it gets better.  I am there to fully support her and do whatever I can to help.  This message board is a God send.  Thank you for your support as well and I will continue posting as I have more info or questions.  Stay well.

lindary's picture
lindary
Posts: 699
Joined: Mar 2015

I never had nausea. I was lucky there. First she needs to define her relationship with food. Does she live to eat or eat to live? Mu husband lives to eat. I eat to live. the difference in our house is he seems to be eating every time I turn around. To me its breakfast and dinner with maybe a snack for lunch. Some days its one meal all day, if I remember.

So when going through chemo I knew I had to eat no matter what it tasted like, or didn't taste. I had learned from others that if they didn't feel like eating they would have french fries. I tried that and I gagged. For me the go to food was mac & cheese. Sometimes we mix in a can of cream of chicken soup and baked it for a while. I also found that when I ate spicy food (Mexican or Indian) I would be able to taste some of it. 

We made breakfast my main meal. Juice, eggs or pancakes or waffles, bacon or sausage and often some fruit. 

I also had a nutritional drink every day along with yougurt (chocolate) and V8. Some days I didn't have all 3. When all is done there may be foods she won't even be able to lookat for a while (like a year or more).

Making a list of her meds is a great idea. I ended up doing that too. 

Encourage her to get into a routine that includes personal activities. It can be reading, watching certain tv programs or even a nap. I found a routine helpd me to focus on things not related to the cancer. 

Good luck. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3546
Joined: May 2012

tiverton,

I'm sorry your daughter is having a rough time of it.  So it is ABVD.  As I said, Prednisone or other steroids is not normally part of ABVD, but her doctor may have added it.  Your description of her does not really sound like someone on Prednisone, but who knows.  

If she is on an anti-nausea, it isn't working for her, and so she most likely needs to switch.  Remember to ask about the EMEND when you can. Tell her that it worked wonderfully for me.  It ordinarily does.  Loss of taste is a common side-effect. She might also develop food fetishes: crave only one thing all the time. I had a friend with lymphoma while in high school decades ago. He became able to eat only pot pie. He would eat nothing else. About half way into my therapy I became able to eat only french fries. That and breakfast drinks were about it for me for a long time.  There is really no explaining this, and no way to guess what it is that she will like. I lost about 15% of my bodyweight by the end of my six months.

Also share with her the very good news: All strains of HL are normally put into full remission on ABVD.  Let her know that there is much cause for hope.  Not every patient has a terrible time on these drugs. She might be spared the worst of it.  She will continue to feel weak, and will lose her hair (depressing for most people), but strength and the hair return after treatment is over.  Help her pick out a wig now, if that is something she will want to wear. Or a few attractive hats.  Hair usually falls out for patients on ABVD a few days after the second infusion, but it can take a little longer.

Regarding being sick of looking at pill bottles: Try something as simple as this: Put them out of her sight. Have a schedule of when to take what (as yousaid you typed up). The rest of the time, out of sight, out of mind. It might help a little.

It is great that you are there for her at the moment.

You said you will see the oncologist during her next visit. Besides asking the doctor about the strain of the HL, ask what anti-nausea she is on, and if she is in fact getting a steroid .

max

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

In regards to lymphoma, stage IV is not as dire as other cancers.  It is staged by  cancerous cells above the diaphragm and below, right side and left side of the body.  For me, I first presented in my breast but that was missed for ten years then my jaw both being above the diaphram on the right side.  My PET scan discovered more on my left side and then below my diaphragm and in my groin area.

I have stage IV follicular cancer, grade2.  What type does your daughter have?  The cumulative effect of treatment takes a toll.  I was 47 at diagnosis and my doctors say I'm in amazing health.  Currently 50.

As a mother this is hard, I'm sorry you're here asking questions but this is a wonderful group of survivors who will not sugar coat this journey but will give you real insight.

Its a journey and everyone reacts differenty to treatment (what is your daughter doing?), I hope and pray all will be well.  Feel feel to ask any and all questions.

Blessings

 

tiverton127
Posts: 4
Joined: Jun 2016

My daughter has mixed cellularity hodgkins lymphoma stage 4.  This past Thursday she went for her second chemo session.  Knock on wood, she did not get sick at all this time.  I expect that by the end of the week her hair will be falling out, but she doesn't seem bothered by this.  I hope she keeps this attitude throughout.  Thanks to all of you who have responded to my posts.  Does anyone out there have the same type of hodgkins as my daughter at the same stage?  Anxious to hear your experience.

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