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how soon after surgery did you start the chemotherapy?

SF73
Posts: 249
Joined: Oct 2017

Hello everyone, 

I had a hysterectomy (left both ovaries in) in June and subsequently diagnosed with endometrial cancer (endometrioid type, FIGO grade 2 , stage 2 - incomplete staging since no lympy node was removed) Last week I had another laparoscopic surgery where my ovaries, omentum, appendix and a 6 cm solid mass attached to my right ovary were removed. We still don't know whether this is a second primary cancer (ovarian) or the recurrence of the original endometrial cancer. I am told my pathology report should be available tomorrow. This time my oncologist mentioned wanting to follow up with a chemotherapy. 

I have recovered nicely from my surgery already and am anxious to start the adjuvant therapy. I read that 'Since the late 1970s, there has been evidence that tumor removal as well as surgical trauma might lead to an accelerated growth of micrometastases'. I wish I knew this last week. I would have asked if it would make sense to have a single course of chemotherapy prior to the surgery. Tomorrow, when my doctor calls to discuss the pathology report, I am planning on insisting we start the chemotherapy this week. And wanted to get your opinion on a few items.

1) How soon after the surgery did you start your chemotherapy? Is it dangerous to be too aggressive?

2) I will be getting a second opinion by the end of the month from another instutition. Would it be possible for me to start the chemotherapy now and switch to another anticancer drug later if that turns out to be the recommendation? Waiting until the end of the month seems very risky to me since my recurrence was fast and furious. 

3) How long after the ovaries are removed is the body free of any estrogen? 

4) Were you given any medication while waiting for the chemotherapy? Megestrol? Metformin? Progestin? 

Thank you in advance for all your help!

PS: I thought some of you might find this portion of the paper interesting:

http://ascopubs.org/doi/full/10.1200/jco.2013.54.3942

In addition, postmenopausal women with node-negative disease benefited significantly and substantially from a single perioperative course of chemotherapy initiated within 36 hours of surgery compared with a randomly assigned control group receiving no adjuvant therapy exclusively for the cohort of patients with ER-absent disease.

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

i started chemo 2 weeks after surgery. 

Edit: surgery was laparoscopic 

Jairoldi's picture
Jairoldi
Posts: 192
Joined: May 2017

I started chemo 4 weeks after surgery.

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

I started chemo 6 weeks after abdominal surgery. You want to be healed because wounds don't heal as quickly when you're on chemo. I spent the time (after 3 weeks) taking a trip to Tuscany :)

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I had surgery Nov 28 and Chemo started Dec 23...Taxol/Carboplatin every 3 weeks 6 rounds...they originally had me as UPSC stage 3C but radiology oncologist found cancer in my neck lymph glands so now I am staged at Stage 4B....

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2521
Joined: Mar 2013

Surgery was April 27, first chemo May 31.

FYI - make sure they step you down in dosage on steroids.  Donna Faye was NOT and had a horrible time.  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1476
Joined: Jun 2015

I started chemo 3.5 weeks after surgery. I wasn't given any medication prior to chemo.

Welcome ckdgedmom!  Looks like this is your first post. Glad you found us. Based on when you had your surgery, I'm assuming you finished all front line treatments. I hope you are feeling well and dancing with Mr. Ned!

 

SF73, I don't have answers to your other questions. But, my niece had a complete hysterectomy at age 37 and went into surgical menopause within a month. Boy did that play havoc with her until they got her hormones regulated! She had cervical cancer.  I don't know how old you are but if you are post menopausal, you many not feel much difference.

Come back and let us know how you are doing.

Love and Hugs,

Cindi

derMaus's picture
derMaus
Posts: 530
Joined: Nov 2016

I started chemo 3 weeks after a radical hysterectomy for Stage IIIb, Grade 3 undifferentiated cancer. I wasn't given any medication beforehand. I was 59 and still in perimenopause, so I still had circulating estrogen. I had hot flashes for about 6 months after surgery, but they were very manageable. Of course I'd been in perimenopause for the preceeding 10 years, so perhaps it's just that I was used to them. I understand your concern about starting chemo vs. waiting but, what I wish I had known then - and what my incompetent gyne onc surgeon didn't tell me, or perhaps even bother to research herself - is that not all endometrial cancers react to the taxol/carboplatin "standard of care". My original path report showed that my tumor had microsatellite instability, a condition which has been documented - since the late 1990's - as leading to platinum resistance. I'd finished my 6 rounds of "standard" chemo when a pre-radiation CT scan identified mets in my retroperitoneal lymph nodes. A Foundation One biopsy confirmed the existing genetic profile, along with a couple of new items, none of which are actionable. So, any further recurrences will have to be dealt with via something that is NOT platinum-based. Had this information been noted the first time around, I would have been on a different chemo cocktail to begin with and, perhaps, not had the recurrence. I say this not to frighten you but to let you know that not all chemos are created equal...so it might be worth waiting a couple of weeks for your second opionion.

SF73
Posts: 249
Joined: Oct 2017

welcome, ckdgedmom! 

ConnieSW, it seems yours was the most aggressive timeline (2 weeks after surgery) and glad to see that chemo did not cause any complications in your recovery from the surgery.  

cheesequeen, Tuscany is a wonderful place to wait for the start of a difficult treatment. Glad you were able to recover from your surgery at such a nice place.

derMaus, I am 44 years old. I was not menopausal prior to the surgery. I am not that concerned about hot flashes, mood chances. I am sure that I can handle those. Since my tumor is ER positive, I think any unopposed estrogen in my body is increasing the risk of recurrence and I hate that I am not taking anything to counter that (Megestrol? Progestin? Metformin? ) Thank you for the info abut microsatellite instability. It is scary how much research we need to do in order to ensure we get the right treatment.  Can I ask my oncologist to order Foundation One now or do they need to check to see if the standard of care is not working before they can justify ordering a complete genomic profiling of the tumor? 

It seems like the timing of the chemotherapy has been studied a bit but primarily for breast cancer. This website summarizes some of those findings:https://sciencebasedmedicine.org/you-have-breast-cancer-how-soon-do-you-need-treatment/ The sooner the surgery the better it seems. For chemotherapy some studies say the sooner the better, others say as long as it is done within 90 days of the surgery, outcomes (survival, recurrence etc) are similar. Of course breast cancer is not a homogeneous thing.  Some probably benefit more from an earlier start of chemotherapy. My first surgery was at the end of June.  I believe I should have gotten chemo after my original surgery. Counting from the original surgery it will be 125 days if I start the chemo on october 30th :( That is a scary thought. 

All the best!

derMaus's picture
derMaus
Posts: 530
Joined: Nov 2016

Get Foundation One testing now, if possible. It can save you headaches later. I also wish I'd had a live tumor assay, aka chemosensitivity testing, at the time of surgery.  God knows I had PLENTY of tumor for them to work with, but my $)#)*$# oncologist didn't even mention it to me, despite having one of the largest labs in the country across the street from my hospital. You might want to search the site for other people's postings about genetic analysis; Beebster posted this on May 19th and I found it very helpful: Mutations/Molecular Analyses will be key to treatment. Also, since the FDA approved Keytruda for any tumor with microsatellite instability (May 23), you may be eligible for immunotherapy depending on what your tests say.

Decor620
Posts: 3
Joined: Oct 2017

My mom has UPSC 1B, suggested approx 6mo of Chemo and Radiation (other specifics unknown until the 24th), but it seems like they are wanting to start treatments very soon. Her diagnosis was just earlier this month, and has already had her complete hysterectomy... this has all moved so quickly. It's quite a whirlwind. I can't imagine doctors wanting to delay any sort of treatments for anyone with this type of cancer- get in there ASAP is my understanding.

 

-Decor620

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Thank you all for the warm welcome...I will try and post a new thread and introduce myself so I don't hijack this one!

MAbound
Posts: 777
Joined: Jun 2016

I started chemo 4 weeks after a TAH. I went straight from getting my staples, drainage tube, and foley catheter out to the infusion room. That was quite a day!

There are so many variables to this cancer that there is no one-size-fits-all answer to your questions.

My take on this is that you are still in panic mode here and need to take a breath so that you can take this one step at a time. Wait for that pathology report. Give yourself a chance to heal internally. Get second and even third opinions. Ask about genetic/genomic testing. These are all important to getting the right plan of action instead of settling for the quickest one; chemo drugs are powerful medicine with potentially serious side effects so you don't want to be on them any longer than you absolutely have to be. Starting on an ineffective drug to switch to something else later will only expose you to greater risk. Der Maus's experience is a testament to how important that is.

When you research, focus on the most recent studies because the science has been changing very rapidly in just the last 5 years or so and there's a lot on the internet that is already outdated. Also focus on studies done on endometrial cancer because what's true for other cancers does not necessarily hold true for all cancers. There is a huge learning curve with this diagnosis and it just doesn't pay to get too far ahead of yourself. There are always going to be new things to look into as you go along. You need more specifics about your pathology and what course of treatment is going to be recommended before you can research anything with effect. 

I'm sorry I couldn't give you the answers you were looking for, but hopefully you'll take some comfort from hearing that you've got some time here to get your answers as more information comes in for you. Dealing with this cancer is not a sprint, it's a marathon. Pace yourself for this taking months or more to get through, but know that it is doable. 2016 was pretty much a lost year for me, but then I made it to enjoy 2017! Hang in there!

 

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Even though I asked for it, my doctor didn’t get serious and do the Foundation One test until I had a reoccurrence. Why not have all the info ASAP?  

Soup52's picture
Soup52
Posts: 886
Joined: Jan 2016

I am the oddball here. I was 3C endometrial with clear cell features. About 4 or 5 weeks after robotic surgery I started 5 1/2 weeks of external radiation followed by 3 internal radiation give 1 each week. Then onto 6 rounds of carbo/taxol. My journey was basically surgery Oct15 and chemo completed by end of June I believe. So far I am clear since August 2016.

SF73
Posts: 249
Joined: Oct 2017

Thanks derMaus and cheeseQueen, I will try to get my oncologist to order Fooundation One. 

MABound,  you are absolutely right. I am panicking and maybe overcorrecting my behavior after the first surgery. After the original hysterectomy in June, even though I had questions about not needing any further treatment, I listened to my oncologist and did not seek another opinion. I am a neurotic person by nature, worrying is something I do independent of my health. Let me put it this way: over the years I googled my symptoms to check whether or not I had various cancers many times before I actually got cancer :) After the surgery, I convinced myself that this capable person is delivering me good news and the part of me that was questioning is my neurotic nature.  Early September I visited my gynecologist because of bloatedness and pain during bowel movement and she said it must be a stomach bug and  that I should not attribute every anomaly to having had cancer.  It would have been wonderful if she gave me an ultrasound. By then my mass on my ovary would be big enough to see. It would have saved me a month! Now since my worrying was right and doctors were wrong at least in three different occasions, I have a hard time stopping the voice in my head. Now I think my neck hurts, I think my armpits are swallon and that all of these could be a sign of metastasis. Don't know if it is real or not. But you are absolutely right. I have to pace myself. This is a marathon not a sprint. Thank you so much for all the support you guys are giving. I am about to drive my husband crazy. It is good to be able to share these feelings with individuals who are also going through them.

DottieDean
Posts: 36
Joined: Sep 2017

I understand.  Ask your docto for something fo your anxiety.

DottieDean
Posts: 36
Joined: Sep 2017

My chemo begins this Thursday, then once every three weeks for a total of 6 treatments.  Port goes in tomorrow. At this time no radiation scheduled.  I don't have MMRT after all - it's papillary serous.  Original path report was incorrect.

SF73
Posts: 249
Joined: Oct 2017

Pathology report is back. I didn't get a chance to review with my oncologist who is out of town but from what I can see, left ovary was fine, appendix was fine. Right ovary was completely consumed by this 7 cm mass, a moderately differentiated endometrioid endometrial adenocarcinoma (so not a new ovarian cancer, this is a recurrence) and worse of it all, the omentum has metastasis at the microscopic level. One good piece of news is I don't seem to have microsatellite instability issue that derMaus was mentioning. 

I believe the presence of cancer - even microscopic- in omentum puts me in Stage IVb. My whole journey started in early June with some complex atypical hyperplasia with foci highly suspicious for endometrial adenocarcinoma. Initial guess was it would be stage 1, grade 1. 5 months later, I am in stage 4b at the age 44 with a kid whose only 11. Every article I read so far suggests poor prognosis for omental metastasis. I try to stay positive but it is hard. My husband and I discussed my diagnosis with our daughter but I still have not told my parents who live overseas. They know about the hysterectomy in June and immediately came to visit us. But they thought that the surgery was for the fibroids and to prevent future chances of developing cancer. 

I am trying to get complete genomic profiling of my tumor. It has been so challenging. Since my oncologist is out of town, his team made an appointment for me in genetic counseling which is not what I am interested in. I am more interested in the acquired alterations (genomic alterations) which are responsible foor the majority of cancer, as opposed too hereditary changes (genetic alterations) which are responsible for about 5-10 percent of cancers. It is very disappointing that my oncologist's team does not know the difference. I will see him on Monday and hopefully get him to order Foundation One. At the end of the month I will get a second opinion from Stanford. I called to see if they can authorize the ordering but they said the oncologist needs to see me first and the person who performed the surgery should be requesting this. 

In the meanwhile, I started taking Megestrol (my regular gynecologist who mistook my initial recurrence symptoms in early September as food poisioning prescribed them to me) Put myself on a quasi-keto diet. (I am a pescetarian, I eat fish but no other meat) I was not too heavy to begin with. I am five foot one, used to weigh 140 pounds (back in June). Now I am 126.6 (last 5 pounds lost in the last month) I still have my appetite but I am so afraid of feeding the cancer. I read a few tiny studies that mention the benefits of ketogenic diet in conjuction with chemo. This is something I can do without having to fight with bureucracy. I don't think I have insulin resistance. Few times it was measured, my blood sugar was low.  I have to convince someone to give me the IGF-1(insulin growth factor) test I guess. Do you think Metformin during chemo can help me as it helped others on this forum? I want to make sure I am doing everything I can. What else can I do?

derMaus's picture
derMaus
Posts: 530
Joined: Nov 2016

I've had both genetic and geonomic testing done. The former is really only a measure of your potential for future cancer and, for me, that boat has sailed. My original surgical path report included some geonomic testing (P53, PMS2/microsatellite instability, estrogen sensitivity) and the F1 report rounded out the picture. My genetic counseling confirmed the PMS2 and that I don't have Lynch. Had my original oncologist cared to do the research, she might have noted the PMS2/platin connection, but she didn't. Disappointment with our oncology teams seems to be a sentiment we share. I assume the Megestrol been vetted for it's impact on your type of cancer; I asked for Metformin because of it's potential impact on uterine cancer in general, and my PIK mutations in particular. I'll be very curious as to what Stanford says. I live in So Cal and have considered going there myself. 

SF73
Posts: 249
Joined: Oct 2017

https://link.springer.com/article/10.1245/s10434-015-4443-1 I should stop googling. 

Do you guys know any cancer survivors who had Microscopic Omental Metastasis of Endometrial Cancer (endometriod type) who responded well to chemotherapy?

MAbound
Posts: 777
Joined: Jun 2016

Remember that you are an individual....a statistic of one as we like to say. You are just scaring yourself needlessly with looking at studies that give statistics to try an figure out what your odds are. They really are the most useless of studies, because most of them are too small to really have much meaning that holds water. Junk science in my opinion. You've had debulking surgery that removed the visible cancer and are about to undergo chemo next which treats systemically to get those microscopic cells. It's potent medicine. There's still a good chance that it will be very effective for you and if not, you may have to keep at it after frontline treatment like a diabetic has to keep at controlling their blood sugar. What you are dealing with may be a difficult situation, but it is by no means hopeless and scaring yourself like this does not put you in a good place for what you have in front of you to do. So quit googling statistics, they are worthless; instead spend your time reading here and taking notes....it's a lot to slog through and not very organized, but there is a lot of helpful information here.

SF73
Posts: 249
Joined: Oct 2017

 

I promise to quit Googling. You are absolutely right. I am scaring myself and my husband with every article I find. Thank you for taking the time to write to me. Really really appreciate it. 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I have no answers but am sending you lots of virtual hugs...

as to the Googling...lol I did that Sunday night and was a big hot mess in my radiology oncologist's office on Monday---he told me to "quit the Google" and remember that a lot of studies are old. Given your age (and I too am fairly young for this cancer at 52) many of those studies are on women much older than us with health issues that come with aging. So no more google for me (except for work and recipes)

As for diet, if you feel it will make you feel better I say go for it---my doctor believes I am doing as well as I am because I am eating low carb and practice yoga almost daily...

sending more hugs...sorry you have to wait for your oncologist to return to get some answers

 

SF73
Posts: 249
Joined: Oct 2017

I am sending you lots of virtual hugs also. Thank you! 

EPH56
Posts: 18
Joined: Sep 2017

I had laproscopic sugery - full hysterectomey 9/8/17 and began round 1/6 chemo cycles on 10/3/17.  I'm already on metformin for Type 2 diabetes and was not given any addition meds except for anti-nausea meds to take prior to treatment and 3 days following.

Since round 2 on 10/25/17 - I've added magnesium for leg cramps, Claritan (not a generic brand) for joint pain, 100 ML B6 a day and an herbal supplement: Chlorella-Spirulina Complex

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2521
Joined: Mar 2013

EPH, steroids is typical for chemo as well.  You have not been given any?  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1476
Joined: Jun 2015

They may give them to her during her chemo visit. I was never given anything prior to chemo. I had all pre-meds in the IV. And, I can tell you the Benedryl made me very sleepy. It made the day go by a lot faster. I slept a lot, woke up, ate and went back to sleep. :-)

EPH56
Posts: 18
Joined: Sep 2017

Yes, I was given the steroids prior to chemo, via the IV day of and for 3 days following. I had benadryl as well (in the IV); but didn't feel sleepy at all. Part of it was the loud party next door to me.  I wish there was a limit to # of visitors or how loud they can be. I really wanted to sleep. Oh well.

EPH56
Posts: 18
Joined: Sep 2017

HI, yes I was given Decadron (5 tablets/20 MG) the night before chemo, then (2 tablets/8 MG) 2x a day for 3 days following. I think I just referred to that in my other post as anti-nausea meds; but it was dexamethasone (Decadron)

Kaleena's picture
Kaleena
Posts: 1910
Joined: Nov 2009

I started chemo about 2 months after original diagnosis.   That was due in part and parcel as to finding it on a routine hysterectomy and then having to go for staging surgery a month later and then chemo a month after that.

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

I had a total hysterectomy on Dec. 22 (abdominal) and had my first chemo on Jan. 18. No medications before except what was in the IV, and steroids for 3 days after. 

SF73
Posts: 249
Joined: Oct 2017

My oncologist is back from his vacation. He is starting me on Carbo/Taxol/Avastin on October 31st. He also increased the dose of Megestrol (80 mg in the morning and 80 mg in the evening). He recommends Metformin but says he cannot prescribe it himself. I need to convince a PCP to give me some. I don't know how to do that since my BG is already low. Any advice? Initial chemo start date was November 6th but I insisted on getting it sooner. Apparently someone canceled and they were able to make that happen (chemo 21 days after the surgery) The only downside is I will be starting the chemo before the chemo education session. I have been reading this site and a few other sites to see what I should be expecting. On Thursday we got a second opinion from UCSF. Medical oncologist there agreed with the treatment plan. She ordered the genomic testing and hormonal receptor testing (apparently we don't know if my tumor was ER positive. I must have just assumed it was since the grade was 2. She said that grade 1s are usually ER and PR positive but grade 2 can go either way) She suggested that we don't delay anything. Learnings from the genomic profiling can be handy if we need a second line of treatment.  On Monday we will also see the head of the department at Stanford Women's Cancer. I hope he will also agree and I will have a lot more confidence in the choices my doctor made. Despite being on Megace and having a healthy appetite, I am still losing a bit weight. I am now down to 124 lbs. My doctor said it was ok to be on any diet if it makes me feel good (nutrition is not something he studied so his opinion is not expert opinion anyways he said) but he wanted to make sure that I am healthy/strong for the chemo.  

Even though I have really tiny veins that nurses that problems with in the past I decided not to get a port. I didn't want to risk delaying the treatment. Has anyone received chemo via IV? How bad is it? I read about extravasation (when a drug leaks into the surrounding tissue rather going into the vein) It seems like it is riskier if the drug is vesicant. But carbo and taxol do not seem to be vesicant, just irritant. Anything I can do to reduce the risk? Maybe drinking tons of water the day before?

I took the medical leave from my work. My oncologist recommended taking the full 12 weeks my company is offering upfront to first see how I will tolerate the therapy. If I feel well I want to go back to work because I love my job but I want to make sure I am making my health my priority. I know some of you worked while on chemo. Would love to learn from your experiences. Did you guys take the week of infusion off? I work at a technology company. All my coworkers are 20-30 something year olds who are very into wellness and fitness. I think they will freak out to see a bald headed woman working amongst them. 

Now that we have a plan in place I am less nervous. The only unresolved issue is my parents. I still have not told them. They live overseas. My mother is 66 years old and has hypertension. Her mother just had a glaucoma surgery and she is taking care of her. My father is 73. They both are very anxious people and google as much as I do :) When I had the hysterectomy this summer (they didn't know about the cancer diagnosis, just the risk of developing cancer in the next 10 years if the hyperplasia was not addressed) they immediately came to the states and were worried the whole time. Even though I was taking 4 mile hikes the second week of recovery. But I guess with chemo there is no hiding. It might be better to share before I start losing the hair. Once I handle breaking the news to them in the most gentle way possible I think I will have less stress in my life. 

If there are any threads that are especially useful about what to expect from chemotherapy/ tricks etc please do let me know. Thanks for all the support. It is really wonderful to have people who can relate to what I am going through. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1476
Joined: Jun 2015

Please read 'Ladies going through chemo'.  I think it will help you get ready for yours.... Lots of first hand information documented by several of us as we were going through each treatment.  I'm glad you are getting started. You will do great.

Love and Hugs,

Cindi

Amatullah
Posts: 36
Joined: Jun 2017

You can always change your mind and get a port if they have problems with your IV.  You can get it done and have chemo the next day, so it won't hold anything up.  I've always had problems with IV's and I tend to get dehydrated easily which makes the IV more difficult.  I'm so glad I went with the port.  I said 'no' to start with and my son talked me into it.  Chemo is tough, so anything you can do to make it more comfortable is a good thing!!  Hugs.

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

The only good thing about treatment was my port.  It made treatment and blood tests so easy and they use it for contrast when I get my MRIs and CT scans. My veins would never have taken all that abuse and there’s no pain when they access my port. I love my port. 

Soup52's picture
Soup52
Posts: 886
Joined: Jan 2016

I didn’t mention this, but I did have my first chemo without a port so we could get started and then my port was in for all the following chemos. For me it was easier having a port. I was able to use both hands etc. I still have my port in.

derMaus's picture
derMaus
Posts: 530
Joined: Nov 2016

I'm glad you were able to have your treatment moved up! I had my first two rounds of chemo in the vein with absolutely no ill effects so you may be lucky as well for the initial round. You also MAY not feel very much the first time, other than some tiredness and possible nausea. I had my first treatment on December 19th and spent the 24th and 25th in bed with nausea and flu-like tiredness but after that was fine until the next session. The entire time I was in chemo I only puked a couple of times, so the nausea wasn't very productive, to use the medical term. One thing you may have immediately, though, is a steroid high. When my first session was done, and after the Benedryl daze wore off, I was wide awake and had plenty of energy. This lasted for couple of days; it was only from reading this board that I understood what was going on. I had them dial the steroids WAY down after that - they started me at 21 mg and I was on 8 mg for the last 4 treatments. The steroids were only given with the chemo, but they were enough to give me hella appetite, a moon face and the aforementioned high. Even at 8 mg they were plenty for me, but your body may react differently. In short, you could be fairly normal after the first round, since the effects are cumulative. One thing I wish I'd done sooner was start on probiotics, the strongest you can buy. I use a capsule of 40 billion with 8 different strands, and the nausea did seem to ease up a bit after I started those midway through. Best of luck to you on Tuesday!

Hummingbird6
Posts: 12
Joined: Aug 2017

Chemo affects really differ between people, and your team will be adjusting the dosages as you go along so it hard to say what to expect.  Usually the steroids and benadryl given with the chemo make you comfortable on Day 1. By Day 3, I was very tired (not nauseaus) and really needed encouragement to get up, drink and eat.  Drinking a LOT is really important, even if you do not feel thirsty. All of us should drink 8 large (8 oz) glasses a day, and increase that for chemo. Water helps with the roller coaster of constipation and diarrhea too (that was a big problem for me).  It took me about a week to get some energy back, get up and around.  So about 10 good days before next chemo can be expected if you are on a 21 day cycle. With each cycle symptoms got worse and it was hard for me to finish 6 cycles. 

My white cells crashed completely first cycle, make sure you get the labs done as ordered to see how low your nadir goes. I required Neulasta and Neupogen (white blood cell colony stimulating factors given by injection) throughout the rest of chemo to avoid the crash, and could not do public spaces, gardening, strangers, or raw unwashed fruit and veggies.  So lots of labs are needed in addition to chemo, which may be another reason to get a port.  They really are handy.

The chemo nurses are wonderful, have lots of suggestions.  Do not be shy about calling your medical team day or night if something is concerning.  Especially ANY fever over 100.

 

 

barnyardgal
Posts: 183
Joined: Oct 2017

I had my surgery on October 10. I had prepared myself for radiation as the oncologist told me the cancer was stage 1, though a little more involved than she thought before surgery. Unfortunately, my left ovary was attached to my uterus, and the cancer went into the ovary. So it's 3a. I was on progesterone prior to surgery, but I'm not on anything right now. I am expecting to start chemo the first week of November, but it's possible it could be the second week. I'm ready to get going.

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

I also would recommend getting a port, which at first I was reluctant to do, but am very glad I did. I am a cellist and did not want to risk messing up my hands, which is possible if the solution leaks while being infused. That way you will also have your hands free for the day of chemo and any contrast for future scans can also be delivered more easily. I never had any meds before getting to the hospital the day of chemo, but I was given a numbing medicine to smear on an hour before arriving. In the IV I was given four or five meds before the chemo (carbo/taxol), and I noticed the Benedryl was really weird stuff as it entered. Chemo was not as bad as I anticipated, but I did have three or four days each three week session where I got terrible bone aches. No nausea though. Good luck as you continue this journey! Martha

PS I started chemo about five weeks after surgery due to the intervening Thanksgiving holiday.

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Cass83
Posts: 151
Joined: Feb 2017

I had my port inserted and had my first chemo the same day. I had to drive an hour to my appointments, so it saved a trip. I am so thankful to have the port, getting it in the arm/IV would be painful inho. I felt nothing through the port, and they can use it for CT scans, PET Scans, blood tests, etc. I will miss it in 2 years when it is taken out.

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