Calling all Massachusetts Sisters
Comments
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What about swimming with the port or other activity? I have read that once it has settled, it's pretty good with sleeping (I sleep on my stomach).
Daisy - I have not been there, doesn't it look beautiful? My daughter's counselor told me about it, but then I was on Emerson's web page today, and they had a link to it. I may sign up - if I could get a free/discounted massage out of the deal, it would be worth it.
Lately, I've been appreciating how healthy I've been. I haven't even had a cold this winter! I know that I'm at least 50# overweight, but other than that, I have no complaints. I'm really scared that my health will never be the same after this.
-Lynne
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you can do anything with the port. I exercise regularly and love to swim, the port didn't bother me at all while I had it
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Hi ladies, I met with Dr. Sajer on Thursday, and I'm getting closer to having a start date. Unfortunately, Dr. Sajer was a lot less definitive about treatment than Isakoff. The gist of it was that what they recommended was aggressive/for 3+ positive nodes, and I only had 1 because they only took 1. She also seemed more concerned about heart issues due to the Adriamycin. Isakoff was not wavering - I specifically asked if they (also talked with chief resident) had any other considerations in treatment, and they said NO, and so I'm more inclined to go with their recommendation. So, I have a training and port placement set up for next Wednesday, and ECG on Thursday, and I'll probably start on Mon/Tues the 20 or 21st.
Oh, also, she said that they usually recommend 4 treatments EOW of AC, then T weekly for 12 weeks - where as Isakoff said 4/4 EOW. What has been your experience?
RTR - how did your survivorship class go?
Sunny here today, but windy! It's supposed to warm up, but at 51 degrees right now, it doesn't feel too warm. I'm including a picture of my front lawn that still has icebergs on it.
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Hi Lynn, I had 4 ACs with three week intervals in between followed by 12 weekly taxols at MGH. I was diagnosed at 54 and had BMX. Prior to BMX there was no suspicion of invasive cancer because the tumors were tiny - 9 mm and 3 mm - and MRI didn't show anything in the lymph nodes. Lymph nodes invasion was discovered during surgery and after they tested two sentinel nodes and one turned out to be with cancer. If you have any specific questions about the AC+T protocol you can always PM me.
I am bad with acronyms, what is EOW?
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Yep another poster from MA.
Recent ADH dx at NWH and now seeking second opinion and treatment recommendations at DF . Seems like there are many of us from MA. I have many other serious comorbid conditions which make this whole crap even harder.
At least it's finally spring here.
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Hi, Lynne -
They decided to wait on the survivorship class until the next time I go in - so May 4th. I have to go in every 28 days now (for 5-10 years) for my OS prescription which I didn't realize was a shot in the belly!!!
I think all of the snow in our yard is finally gone!
Hi, Dwd79!! I had my second opinion at DF. I'm glad that I went, but they didn't have any different treatment plan for me so I stayed with Winchester Hospital where I have always gone and is very convenient to me. Welcome and best of luck to you.
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Hi Everyone,
I am just joining this MA group and am delighted to have company. I am beginning chemo (TC) on Monday April 13 at MGH. Dr. Commander is my MO, Specht was my surgeon, Liao was my plastic surgeon, also saw Taghian. Today, I really don't like having to face chemo!
My oncotype dx was 20 (low intermediate) with a 12% risk for recurrence, so chemo was a personal choice and might lower the risk to 8%. We have a 10yo and 7yo, so this has been hard on the whole family. I am determined to walk as often as possible over the treatment period after reading the benefits of exercise during chemo. I am also going to try and get a chemo buddy for each session. My husband will be with me for the first infusion. I would love to know if anyone is also at MGH for chemo in April, May, or June. I will be commuting in from W. Mass with a designated chemo buddy for the other sessions.
On a positive note, my BMX went well with no complications and direct reconstruction is healing nicely. I loved my MGH team for the surgeries. And I found myself more at ease and less depressed at MGH than at our local hospital in W. Mass.
Take care!
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Hi Positive spirit -
My oncotype was 19, so like you, I chose chemo when I wasn't really being forced to. I finished January 20th and I am so glad I went through it. I really had no major side effects (well, other than hair loss!) and I walked almost every day through chemo.
Best of luck to you!
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Hi Positive - I saw that you found the "starting in April" discussion board, so that's good - I post there too for all those going through this at the same time.
I have a 18yo, 13yo, and 9yo - the younger two are my daughters, what are yours? Anyway, somewhat close in age, so I know how you feel. My family, though, seems to be in deep denial. They are just carrying on like nothing is happening or will happen to them. The youngest has had a couple of emotional (crying) outbursts, but they are over like a summer storm, and she's back to playing, disobeying, and general misbehaving. She keeps me on my toes, that one.
Regarding care, I saw the Boston MGH doctors, and Specht did my surgery. Isn't she great? I had to go back for a re-excision, but other than that (not anyone's fault, just part of the shit sandwich), it was a very good experience. I am healing nicely, the scar at the incision should be very minimal. I would have totally trusted her to do reconstruction if I had MX. I was supposed to see Taghain for follow up meeting, but saw Winkler instead, she was at my original consult and she was just the most pleasant and upbeat person. I saw Isakoff and chief resident Micolizzi for MO consultation - found them more clinical.
I am not going to go to Boston, though, I've decided to have my treatment at MGH in Concord with Susan Sajer (MO) and Robin Schonthaler (RO). I didn't want to add 2-3 hour commute to my treatment (and follow up) days, it just seems too stressful to me. I'm going to try to keep working full time, so any time I can save will help me with that. You have my admiration for driving to town from Western MA - I have had thoughts that I'm being a baby, but Robin Schonthaler is a friend of mine, so I that weight heavily in being in Concord so I would have an "in" on the situation.
Forgot to add (editing) that earlier in this thread is a recommendation for a wig salon on Newbury Street - not sure what your plan are for hair loss (Dr. Sajer said, "have a plan" - not just for coverage, but discuss with the family what is acceptable to them/you about your baldness!)
-Lynne
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Positive -
I got my wig at the Salon on Newbury Street. It was expensive (1600), but worth it to me. People that I work with complimented me on my hair (what did you do different?) and they didn't realize it was a wig! I wear it to work only.
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Readytorock - so great to hear about your story. I am glad not to be the only one with a lower oncotype dx who chose chemo. And the thought that I might be able to walk throughout chemo....just maybe...is great!! I look forward to hearing more about your post-chemo recovery. What is an OS prescription?
Lovlilynne - I learnt that the chemo regimen is identical wherever you receive it, but out here the hospital environment and concerns about competency was so depressing. We connected with PACT at MGH to help the kids through this and the child psychiatrist was great. In fact, she helped reduce our anxiety more than any other medical provider we met! We also got a book from her on how to address things with our kids. Denial seems to be a very common coping strategy for kids. She also told us that kids who experience 1-2 adverse situations learn how to build coping strategies/resilience earlier in life and studies show that they fare much better in adulthood than individuals who had no adverse situation in their childhood. Sorry about the re-incision...I can relate as I had to go back after a lumpectomy but at that point I told her that I just wanted to have a BMX. It was the right choice for me given their post surgery findings. And being at Concord/Emerson is just fine...truly the treatment plan remains identical as it would be in Boston. My hospital here is like a self-service center. I don't think I will get a wig but I have the prescription just in case I freak out. I admire that you are working full time!!! Wow! Do you have a good support?
-Lorraine
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Lorraine, I am going to try it and see how it goes, I have a desk job, on the phone and computer for most of my day, so it's not physically challenging, but just mentally. I wish I could say I loved my job and co-workers like KB on the April thread. It's such a blessing. My job and co-workers are ok - I've had way worse situations, but nothing that motivates me these days. I feel like I'm just putting in time until I can retire. But, with two young children, one with T1D, that won't be for a while. Anyway, I may end up taking a short MLOA at the end of treatment - depends on cumulative effect, and I also realize that, while work is good for me, it's probably not fair to my co-workers and/or project teams since I am hardly putting in 100%.
RTR - $1600!! Yikes, I had no idea. I looked on line and found them $200-300, are those the "cheap" ones? I am more on the side of not getting one, but once in a while I think it might not be bad to have one for certain occassions. If I go the 20 week routine, that's a long time w/o hair - there's bound to be something that comes up.
Lynne
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My $1600 wig was real hair - the synthetic ones there were much cheaper and they probably look just as good. The hair length that I wanted (longer - although not as long as my real hair was) they said wouldn't work well with synthetic - I can't remember exactly why.
To me it was probably just a case where I would feel more confident about it the more money I spent. I know that may seem silly. I'm STILL waiting to see if insurance is paying for any of it!
I am hoping to unveil my new SHORT hair on June 4th. I have an appointment made for a cut and color that day - just hoping my hair cooperates and grows a couple of inches by then!! I could go out in public now - I am starting to feel comfortable with it this short, but it is GRAY/WHITE and I am only 44 years old. It was before, but no one knew because I colored it.
Lorraine - OS is ovarian suppression. I am/was premenopausal (chemo started menopause for me, but it can reverse.) I will probably get my ovaries taken out later this year and then won't have to get the shot anymore.
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Muska - never replied to you - EOW = every other week
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My first infusion was yesterday: a synopsis
Cyclophosphamide went in well. Then the docetaxel..within 30 seconds, I went into anaphylactic shock. But my nurse stayed with me the whole time and gave me all the right directions. A medical team of 20 arrived, but I was warned about that. And within a few minutes of treatment with benadryl the symptoms subsided. I was back to normal within 15 minutes. Scary but in good hands with my medical team. They rechallenged me...this is protocol in some places as patients often react the first time and then manage it fine in the second treatment. I had the same reaction and the infusion was stopped. The second time was milder but indicated that I had a truly hypersensitive reaction to Docetaxel. My regiment was changed to AC and I got the doxorubicin adjuvant therapy. That went fine. My day began at 7am and ended at 11pm. Today I feel fine and managed to walk with ease around the block.
I want to let folks know that if you do have as severe a reaction, the team is really equipped to handle it. And I felt fine within a few minutes and was walking around with ease an hour after the reaction. I am grateful for today, to have been at MGH, and that chemo will get my body to a better place in dealing with cancer. Thankful for the little things.
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Lynne - I am sending you lots of hugs! Such a brave woman and managing work and babies (well big babies). I don't know you but I am already in awe of you with all your posts and honesty. Will be thinking of you this week!
Readytorock - I was thinking of OS as well as I am premenopausal. BUT got my period, yes, on the first day of chemotherapy...so unprepared. But just a biological note to say 'hey girl, I am still here for you and you are totally reproductive!'
I was also thinking of having my ovaries out later and getting a colonoscopy (that is scheduled in mid-june). One step at a time.0 -
Hi MA sisters, TGIF!
I had a busy week - had my port placed Wednesday and echo cardiogram on Thursday. I did my port placement with a local - no sedation. It ended up ok, but I had a crazy episode of my HR climbing higher and higher in a short time frame (I thought I was having a heart attack), but the doctors and nurses handled it, and all is well now. I've named my port "Newbury". That way it can be Newbury Port :-)
I start my treatment next Tuesday. My daughters and I decided to cancel the weekend away (we were going to go overnight to Portsmouth, NH for 2 nights). I feel like it's more responsible for us to get things done this weekend before I start chemo and potentially won't have the energy or interest in doing it. I have BB/BS pick up scheduled for Tuesday morning, and I hope to have several boxes and bags of stuff for them to pick up.
In order to make it somewhat fun for my daughters (they are starting their April vacation), we are all going to get mani/pedis on Sunday, and I'll take them to Target (whoo hoo - but it was what they requested), and I may take a ride to Newburyport :-) I'd like to get to Worcester to visit my son, too, but we'll have to see. DH is on-call, so that always presents challenges.
Anyone have plans for the weekend?
Lynne
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I also recommend The Salon at 10 Newbury, they are wonderful there. They have private rooms in the back where they help those with impending hair loss. The owner spent at least 45 minutes with me just trying to match my hair color (I'm a natural blonde, so it can be challenging). When I went back for my second visit, she had 3 options for me to choose from. One was a natural hair wig that would have cost $1700. She definitely did not push me into that and in fact steered me away because the texture wasn't quite right. I ended up with a synthetic wig for $450. That includes all the appointments including styling of the wig, shaving my head when my hair started to fall out and if I want, I can go back to have them out in clips for when my hair gets longer. I feel like I got my money's worth.
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Lynne, hope you had a good family weekend. Such a great mom
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Hi MA sisters, I hope you had a nice weekend. I know I should have appreciated the weather, but it was still too cold for me! I felt better on Saturday or Sunday, but spent a lot of time in bed - just cold and tired. I did go to a comedy show on Friday night, a local place holds one every year, and it's always good for a few laughs. On Sunday, everyone but the youngest DD went to visit DS at college in Worcester. We had lunch at EVO and then came home. It really lifted my spirits to see my son. He will be home in two weeks. I can't believe it. He's still looking for a summer job - he contacted a couple places, but doesn't plan to follow up until he's home. I think it may be too late to get something - this is where he was last year (he was laid off from existing job the first week in May), and he never got another job.
Hope you all had a nice weekend.
Lynne
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Hi Everyone,
I am a new member here. Patient at MGH (Specht, Moy, Taghain is my dream team). I was just diagnosed in March. Had a lumpectomy with clean margins and negative node. Will meet with Moy tomorrow to discuss chemo which will start in two weeks, I think. I am triple positive so will need Herceptin/Taxol or possibly the clinical trial of TDM1, Radiation then Tamoxifen. I am also a nurse here at MGH, married to a very supportive husband, 2 grown children (ages 25 (a firefighter) and 21 (Stonehill college student) who are managing this well) I am blessed with wonderful support and learning so much on these boards that is helping me tremendously! Would love to connect with local ladies... I live on the South Shore... and here at MGH!
Positive Spirit- so sorry to hear about your reaction. It is my greatest fear at this point. Good to know how well you were cared for and the response was managed quickly.
I will post again in a few days with my treatment plan- thank you all for sharing your stories- so helpful to read!
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Hi Kerryd423 - a belated welcome, sorry to have to meet you under these circumstances. If you read the thread to date, then you know that I also had Specht as surgeon. I got my MDT advice from Specht, Winkfield, and Isakoff. But, I decided to go the MGH satellite at Emerson in Concord. How did your appointment with Moy go?
I have learned so much about the IRL experience of going through chemo - it was irreplaceable as far as being prepared. Even when I went for "training" before the chemo, they covered about .25% of what there is to know, and I am so grateful for that. Feel free to ask any questions.
Now that the weather has finally turned, I am hoping that we could arrange a date to meet up at the healing garden in Harvard, MA (http://www.healinggarden.net/) - that's probably a haul for you, so maybe we can all meet up in Boston some time too.
-Lynne
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I would love to visit the Healing Garden. How about next weekend (not the one coming up)?
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May 16 or 17? That would be good timing for me as far as treatments go, it will be the weekend before #3. My son's birthday is on the 18th, and I think we may be celebrating on the 17th due to my treatment and I have also signed up for one of the American Heart Association's Feel Good Look Good seminars on the night of the 18th. That's my long-winded way of saying the 16th would be better for me.
Lynne
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I would come to the garden but I will be at WPI's graduation on the 16th. I will catch you at the next gathering! I hope that everyone does meet and we can make it a regular thing
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I will be away on vacation - Cape Hatteras, NC Looking forward to being away. Checkout Little Pink Houses of Hope. Weeklong vacations for families with a person with BC. I believe you have to be in treatment currently or have been within the last 12 months.Next gathering!
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Hi - Is it just Sjacobs and I for healing garden on Saturday? I realized this week that DH is working on Saturday, but I think I could still manage a visit, it's not that far for me, maybe 20-25 minutes? However, it would be nice to do it when more could come. OTOH, it looks like this is the weekend for my very favorite flower - the lilac.
Lynne
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I will be at a graduation and then headed to Philly. Have a lovely visit. I am hoping we will be able to meet there another time as well. Thanks for planning!
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Lynne, perhaps we should wait until after graduation season? We would likely get a few more people. I am still free though
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Hi - weird question, but just asking in case anyone knows - I will probably have to call DMV, but dreading that.
I have to renew my license, and I'm due to have my picture taken - will they let me defer that since I have no hair?
Lynne
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I think you can use the same picture for a number of renewals. I forget how many times. You probably will not need a new picture taken Google Mass DMV license renewal see if you can get the answer on line0
